Engaging Patients and Caregivers in Schizophrenia: A Collaborative Care Approach

Announcer:
You’re listening to NeuroFrontiers on ReachMD, and this episode is sponsored by Bristol Myers Squibb. Your host is Dr. Shelina Ramnarine.

Dr. Ramnarine:
Welcome to NeuroFrontiers on ReachMD. I'm Dr. Shelina Ramnarine, and joining me to share collaborative strategies to engage patients and caregivers in schizophrenia treatment are Dr. Apurva Bhatt and Ms. Shannon Pagdon. Dr. Bhatt is a child, adolescent, and adult psychiatrist and a Clinical Assistant Professor in the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine. Dr. Bhatt, thanks for being here today.

Dr. Bhatt:
Thanks for having me.

Dr. Ramnarine:
Ms. Pagdon is a joint master's and doctoral student at the University of Pittsburgh School of Social Work. Her work is grounded in lived experience of psychosis and in peer support. She's also the co-creator of Psychosis Outside the Box and serves as the Vice President of Lived Experience Research for the International Early Psychosis Association. Ms. Pagdon, it's great to have you here as well.

Ms. Pagdon:
Thank you so much for having me. Happy to be here.

Dr. Ramnarine:
So let's dive right in. Dr. Bhatt, when discussing medical options with a person living with schizophrenia, what are some of the most important elements to get right in those early conversations?

Dr. Bhatt:
First and foremost, it's really important to know the person in front of you. Get to know what matters to them, what their values are, what their goals are, who this person is in front of you, and how you can help them along their journey. Part of this is also understanding, from their perspective, the most distressing experiences they're having that are getting in the way of their goals. And then focusing on—from a medication standpoint or other treatment standpoint—how we can alleviate some of that together.

Dr. Ramnarine:
Those are some great points. Ms. Pagdon, when it comes to building that initial engagement, what strategies can help build or strengthen the partnership?

Ms. Pagdon:
Yeah, that's a great question as well. I think there's a lot of different things that one can do in order to build a relationship and rapport with somebody when they're first coming in to services. Namely, I would say focusing on the relationship with the person is really important and seeing them as a person first and foremost. I know for myself, something that always feels very grounding and helpful in services is when people don't try to change my mind about certain things or honor my language around different experiences that I might be describing.

And Apurva brought this one up as well, but not assuming distress around certain experiences is a really important one. There are lots of folks who experience visions, voices, and things like that but find them very meaningful and beautiful. And so having conversations around that and what aspects of people's experiences are distressing for them is a really great starting point.

And then the last thing I would say is, especially early on into services with schizophrenia, I always think about the age of onset for something like that. I know for myself, I was 17; it tends to be around 16 to 30—somewhere between there. And so emphasizing that medication is really just a tool and something that folks can utilize but it’s not the only treatment or solution that somebody can have as part of their support or their psychosis or schizophrenia is something that I think also instills a lot of hope because side effects can be really intense. And when you're 17 and told that you need to take something forever, it can be quite depressing. And so invite people to really define what success will look like for them, where they might want to go in their lives, and what their own personal goals are.

So upfront, talk to people about their different options with medication, where it might play a role in their life, and where it can help with their experiences; just be very transparent about all aspects of taking medication. So those are the things I would add.

Dr. Ramnarine:
Thanks so much for those insights. As a follow-up to that, how can we engage supportive partners in a way that centers rather than overrides the patient's voice during onboarding?

Ms. Pagdon:
There's a lot here, I would say; really center the perspective of the person in treatment and how they want support persons involved or not. Also, I just want to say it's important to have an expansive definition of what support people can be, so not just thinking about family, but really thinking about chosen family—partners, loved ones, and friends—because I think that also will make anybody more likely to want other people to be involved, right? When you can really choose the people who support you in a way that feels good to you.

And I would say create space for everybody's voices to be heard and make sure that different perspectives are taken into account. And then really focus on goals that align with everybody's needs—without diminishing the perspective of any person—and really focus on collaboration.

Dr. Ramnarine:
For those just joining us, this is NeuroFrontiers on ReachMD. I'm Dr. Shelina Ramnarine, and I'm speaking with Dr. Apurva Bhatt and Ms. Shannon Pagdon about how we can engage patients and care partners when introducing a new class of schizophrenia treatment.

Dr. Bhatt, we know that clinical explanations can sometimes create more confusion than clarity, especially when introducing newer complex therapies. What counseling strategies have you found helpful when walking patients and family members through treatment options?

Dr. Bhatt:
When you are explaining treatment options, you want to use visual aids. You want to do it slowly and try to not use a bunch of medical terminology to explain the various options. Oftentimes, I recommend using a whiteboard or a piece of paper to write down the different options and the pluses and minuses of each. Engaging that individual to also contribute to that in terms of which options are available to them and also the pluses and minuses of each can go really far. That's part of the shared decision-making method.

It's also important to explain to folks that different combinations of supports are going to be helpful to them, and that's unique to each person. And it's on that individual to go on that journey—and their family to also support them in that journey—and figure out the right combinations of support.

Dr. Ramnarine:
Thanks for sharing those key insights. And, Dr. Bhatt, if we focus on the larger care team, what role do pharmacists and nurses play in supporting people with their recovery goals?

Dr. Bhatt:
Pharmacists and nurses play a huge role, especially if they are part of the clinic or if they are working in a pharmacy that is offering these new medications to people living with psychosis.

I'll start with clinic nurses. These are individuals who might be that first touchpoint, right? As someone walks into a clinic, they're getting their vitals drawn and they're getting checked in. And so making sure that even that clinic nurse sees this person in front of them, is able to form that connection, and be a warm person in that clinical setting is really important.

Nurses can also help with monitoring for side effects; as they're getting vitals, maybe they're noticing different things or maybe the person is endorsing, ‘Hey, I've been feeling these things,’ as they're getting their blood pressure checked. So they might have important information that could be shared with the provider.

Pharmacists also play a very important role. Psychiatric pharmacists are very knowledgeable and can be immense partners, especially when individuals are having complex psychopharm situations, they have other medical conditions, or they are taking antibiotics or medications for other things. They can help you think through what would be the safest psychopharm choice, especially if it's a situation that the provider is not familiar with.

They can also be that friendly face at the pharmacy, right? For some people, they’re getting their medications on some regular cadence, and being that friendly face and approaching them with warmth and understanding can make a huge difference. It’s about having that hope-filled, recovery-oriented mindset. So pharmacists play a huge role in all of those things.

Dr. Ramnarine:
Those are great points of consideration. Ms. Pagdon, can you describe what good outcomes look like when the healthcare team partners with people living with psychosis to support their recovery goals?

Ms. Pagdon:
I think the biggest thing is the person really feels safe in disclosing things to the provider. I think that speaks a lot to the relationship and the rapport. And again, for the provider, it’s about describing a person's experiences in the ways that resonate with them and focusing on goal-setting with the person.

I would also emphasize the importance of support outside of the clinic and connections with other people with lived experience, peer support—which is my own background—as well as support in work and school. Again, just thinking about the age of onset for schizophrenia, most folks are often in high school or in college, and so offer support around that. And to the hope piece, encouraging people to really focus on work and school and not give up on it if that is something that's important to them is definitely important to think about here.

And lastly, I would just say long-term success really starts with this sense of shared support in early treatment. And so I would emphasize above almost anything else, how does the person define success for themselves? What would success look like to the person? And how can we support them in making that happen for themselves? And I think that shift away from ‘how can somebody get back to who they used to be?’ to ‘what does this new reality look like for the person? How can we move forward with that still being what things might look like?’ I think those are the big things.

Dr. Ramnarine:
Thank you. Dr. Bhatt, any closing comments?

Dr. Bhatt:
Yeah. I think Shannon described that wonderfully. And I think one other outcome that we should think about, especially with the age of onset being in those teenage years, is we really want to make sure that young people—when they are first going through this episode—that they are feeling empowered in their healthcare decisions, right? They are learning how to make these decisions in a way that feels right to them. And that's where shared decision-making can be very important, not just for adults, but also for these younger folks. Help them practice that in the visits early on so that by the time they're 18, they're able to clearly advocate for themselves and share what's working and what's not. You really want to be building those skills early on and not waiting until they're 18 to begin making decisions in their life.

Dr. Ramnarine:
As those final comments bring us to the end of today's program, I want to thank my guests, Dr. Apurva Bhatt and Ms. Shannon Pagdon, for joining me to discuss ways we can collaborate with schizophrenia patients and their caregivers. Dr. Bhatt, Ms. Pagdon, it was great having you both on the program.

Dr. Bhatt:
Thanks for having us.

Ms. Pagdon: 
Thank you.  

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You’ve been listening to NeuroFrontiers, and this episode was sponsored by Bristol Myers Squibb. To access this and other episodes in our series, visit NeuroFrontiers on ReachMD.com, where you can Be Part of the Knowledge. Thanks for listening!