Care Partner TK Communicating Archives

Who Are the Members of a CAR T-Cell Therapy Team?

June 21, 2023/in Care Partner Programs, Care Partner Resources, Care Partner TK, Care Partner TK Communicating /by Kara Rayburn

Who Are the Members of a CAR T-Cell Therapy Team? from Patient Empowerment Network on Vimeo.

Who are the members of a CAR T-cell therapy care team? Expert Sarah Meissner provides an overview of healthcare team members and how they support patients during the CAR T-cell therapy process.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute.

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Transcript:

Katherine:

So, let’s begin by learning more about Sarah’s role. Sarah, can you explain what you do as a transplant coordinator at CBCI?

Sarah Meissner:

Of course. So, I like to say that as a coordinator, I am kind of the travel agent of the CAR T process. So, I meet with the patients when they are determined to be a candidate for CAR T-cell therapy.

And I act as kind of the intermediary between the patient and the care team. I help them get set up for all of their appointments as well as provide education for what’s going to be occurring.

Katherine:

Okay. So, when someone is undergoing CAR T-cell therapy, who are the essential members on their healthcare team besides you?

Sarah Meissner:

We have a pretty big care team. So, of course, we have the physician who is kind of at the helm for determining the care plan. We also have financial coordinators, social workers, dieticians, as well as the nursing team who will be providing the care to the patient.

Katherine:

So, how many people could be on a team?

Sarah Meissner:

It could be as many as 10. It just depends on the individual patient’s needs and how different people can help.

Katherine:

How do you, specifically, work with CAR T-cell patients and care partners?

Sarah Meissner:

So, I am their main contact during the process. So, any questions that come up that I can help with, I’m there via phone, email, in-person meetings. I also am big in education. So, sitting with the patient when they’re in clinic and helping them understand what this treatment is, why we’re doing it, what they can expect and just helping them through the process.

How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner TK, Care Partner TK Communicating /by Kara Rayburn

How Can a Social Worker Help CAR T-Cell Therapy Care Partners? from Patient Empowerment Network on Vimeo.

What support can CAR T-cell therapy care partners expect from social workers? Licensed clinical social worker Marc Paloma shares how social workers support care partners and patients before, during, and after the CAR-T process. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

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Transcript:

Katherine Banwell:

What is your role in helping CAR T-cell therapy care partners?

Marc Paloma:

So, here at the University of Chicago Medical Center, every patient who’s identified as going through the CAR T process, I meet with them and their care partner right when they’re identified as candidates for CAR T. There’s a full social work psychosocial assessment that gets completed. It’s an 80-question questionnaire that involves the patient and the care partner both just asking all kinds of questions about the support that they have, how they’re coping. Just lots of very practical kinds of questions about have you completed your power of attorney, and do you understand the process of the CAR T? So, I find that I’m picking up on providing support to the care partners when I’m doing that initial assessment.

And then throughout the process after the patient goes through the CAR T process hospitalization and when they’re coming back for their follow-up visits. So, I can do lots of sort of follow-up check-ins with the care partners, see how they’re doing, how they’re coping, how things are going. I also try to make sure that I foster an open dialogue with the patient and the care partner. Again, since so that it’s at least being said out loud that the care partner is also going through their care – their parallel process of being the care partner and what it’s like for them and that it can be stressful.

That often leads to a little bit of a conversation sometimes of balancing between the patient’s feeling sometimes of “I’m being a burden to my care partner, I feel guilty about doing that.” And then the care partner’s feelings of, “No, you’re not being a burden. Of course, I’m going to do this for you because I’m your,” spouse or your partner or your sister or whatever.

And so I try to foster that open dialogue between the care partner and the patient so that they both sort of know this is what we’re feeling and it’s not just being kept inside. That it’s actually being spoken out aloud. I just and I think that is just helpful because that’s just sort of lets the partnership – the partners know kind of what’s going on. You’re actually talking out loud. And I feel that as the social worker, I’m able to facilitate that communication, so.

CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare Team?

March 29, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Communicating /by Kara Rayburn

CAR T-Cell Therapy Care Partners: What Questions Should You Ask the Healthcare Team? from Patient Empowerment Network on Vimeo.

What questions should CAR T-cell therapy care partners ask the healthcare team? Social worker Marc Paloma shares key questions to ask to prepare themselves for the CAR-T process for their loved one, explains the role they play as a care partner, and discusses team members who can support them. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

What Resources Are Available for CAR T-Cell Therapy Care Partners?

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care?

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help

Transcript:

Katherine Banwell:

When meeting with the healthcare team, what are key questions that CAR T-cell therapy care partners should ask?

Marc Paloma:

Sure. So, I think probably the most important thing for the care partner is making sure that they know who their key resource health providers are in the process. And, of course, not to discredit myself in any way, of course, because I think the social worker is obviously a very important partner in the whole process of CAR T. But here at the University of Chicago, we have CAR T nurse coordinators. They are the ones who kind of like sometimes translate things down into kind of plain English for patients.

They talk to the patients and the care partners about when your CAR T collection is going to happen, here are the next steps. Here’s maybe some testing that you have to have done prior. So, I always tell the care partners, that is – so that’s the person that you go to for sure. You go to your nurse, your CAR T nurse coordinator to answer your initial questions. And then they can bring other healthcare providers in to answer more specific questions.

So, one, knowing who your key resource health providers are. I think it’s also important for them – like a key question is to ask kind of in the vein of what are my expected responsibilities? What exactly am I going to be asked to do as the care partner? For us here at the University of Chicago, we do have a very set list of specific rules and responsibilities that we give to care partners that’s written down, and we provide that to them.

And it’s all the basics that you would think about making sure the patient has hydration, they’re taking their medicine, they’re getting their rides to their follow-up visits, somebody’s with them if there’s anything that they need. Somebody’s taking care of all the concrete things at home like cooking, cleaning, laundry, outside grocery shopping, things like that. So, those questions and then I think another thing is what – just so in the same vein of just so that the care partners know what to expect, I always tell healthcare partners ask questions like, what is it going to be like for the patient during the CAR T process?

What’s their condition going to be like? And then what is their condition going to be like when they leave the hospital, and I’m providing the hands-on care for them at home? Just so that they have an idea of what to expect. And I find that that’s important because there are some care providers who really think that when patients go home that they’re going to be bedbound and need 24/7 care, and we have to sometimes do some re-educating that that is most of the time not the case for patients.

Yes, you will have the responsibility of providing care, but it won’t be like you have to be awake 24/7 for weeks and weeks. So, those are important things I think for care partners to ask.

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