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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.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

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

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

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.

Expert Advice for CAR T-Cell Therapy Care Partners

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

Expert Advice for CAR T-Cell Therapy Care Partners from Patient Empowerment Network on Vimeo.

How can care partners prepare to care for someone undergoing CAR T-cell therapy? Social worker Marc Paloma shares advice to prepare oneself for the process and encourages care partners to manage expectations with friends and family. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

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

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

Transcript:

Katherine Banwell:

Marc, what are three key pieces of advice you have for care partners who are preparing to care for someone going through CAR T-cell therapy?

Marc Paloma:

So, I sometimes use the analogy with them that for patients as well, but also for the care partners going through CAR T is almost like preparing or going through a marathon or doing marathon training. So, for the CAR T partners, I always – to the CAR T care partners, I always say as much as you can be in the best physical and mental shape as you can be going into the process because there obviously will be a lot asked of you as the care partner. I also remind the care partners remember that you are not a perfect person and there are going to be times where you maybe will make mistakes or maybe not do the best that you think you could have been or you could have done. And just to forgive yourself if needed.

And also the last thing is to acknowledge even out loud to family members to the patient that while you’re being the care partner for that you are also going through a process as well, a parallel process to something that the patient is going through. And that’s something that can create its own anxieties and insecurities for the care partner. So…

Katherine Banwell:

Yeah.

Marc Paloma:

…those are the three important things I would say.

And lastly, be patient with the process as the patient goes through the recovery and the healing process. There are many days where if you’re going forward, things are going well and it can feel like three steps forward and then maybe one step backwards.

So, just be as patient as you can with that healing process and as the care provider, you and the patient will get through it. It just sometimes takes time to go through that process.

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

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

Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help from Patient Empowerment Network on Vimeo.

Asking for help as a CAR T-cell therapy care partner does not show weakness. Social worker Marc Paloma shares why it’s important to ask for support and resources. 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?

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

Transcript:

Katherine Banwell:

Why is it so important for care partners in asking for help?

Marc Paloma:

I think it always keeps getting back to what I had said previously was that it’s important for care partners to acknowledge that they are also going through a parallel process. Obviously, it’s not the same process because the medical intervention isn’t happening to the care partner, that’s happening to the patient obviously. But there’s also a process that the care partner is going through. So, of course, the main focus of all the treatment and the follow-up visits, a lot of it, of course, is focused on the patients. Them getting blood draws and results and how are things going and looking for signs of infection and all of those things.

So, there’s so much focus on the patient that I always want to make sure that the care partner knows that they’re not being lost in the shuffle. That there’re also somebody who’s kind of thinking about them or at least acknowledging that, “Yes, I’m going through this process as well.”

And that is something that can be very stressful. It can be very taxing physically; it can be very taxing mentally. And I feel like just knowing that a care partner somebody is there to tell a care partner that like, “Yes, I acknowledge that you’re going through this and that this is happening.” I think it just helps a care partner sometimes feel that they are being supported or that they’re being heard. Because I feel that sometimes care partners feel that it’s they’re the unsung heroes doing the heavy lifting of doing the caretaking for the patient.

And, yes, it’s not about the care provider doing it so that they can get the glory of being the care partner. But it is sometimes nice for somebody to say to them, “What you’re doing is a really hard thing. And it’s obviously very important, and the patient relies on you, and our care team here at the University of Chicago relies on you.”

“So, what you’re doing is important, but it can also be sometimes difficult physically and also even mentally.”

Katherine Banwell:

Yeah.

Marc Paloma:

So, it’s just good to I feel like good to give that encouragement to the care provider.

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

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

How Can CAR T-Cell Therapy Care Partners Maintain Their Own Self-Care? from Patient Empowerment Network on Vimeo.

Self-care is key for CAR T-cell care partners. Social worker Marc Paloma reviews ways that he helps support care partners and provides tips to maintain self-care while caring for your loved one. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

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

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

Transcript:

Katherine Banwell:

Yeah. How can they keep up on their own self-care?

Marc Paloma:

So, I try when they’re doing their follow-up, when the patients and care providers are here for the follow-up visits, I try to check in, “How are you doing?” I will remind care providers like, “Check in with yourself. How are you doing? How are you feeling? Are you feeling stressed out? Are you feeling okay today?” If possible, we also talk about having a plan from the outset at the beginning of the discussion for the CAR T of maybe having people, a small group of people that you can rely on so that if there’s a time that you need a mental health break, you can call one of your family members or one of your adult children or somebody from your faith organization or a neighbor. That small group of people that you may be able to rely on to say, “You know what? I’m needing a little bit of a break today.”

“It’s been maybe seven days, and it’s another day today we’re at home. I feel like I just want to take a bit of a break. Can I call my,” – the parents, or excuse me, “can I call the patient’s sister and have her come over, so I can go and have some time to myself?” Go to the library, read, or go out to lunch, or do a little shopping, or do whatever. Go for a drive or for a walk. So, I think those are important things. It’s almost like having a care partner for the care partner.

Katherine Banwell:

Yeah.

Marc Paloma:

You want your backup support people so that they are – they know that they’re supported and if they need some help, that they can get some.

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

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

What Resources Are Available for CAR T-Cell Therapy Care Partners? from Patient Empowerment Network on Vimeo.

Are there resources for CAR T-cell therapy care partners? Licensed clinical social worker Marc Paloma shares information about support resources that are provided to assist CAR T-cell care partners. Marc Paloma is an outpatient hematology/oncology clinic social worker at University of Chicago Medicine.

Related Resources:

Expert Advice for CAR T-Cell Therapy Care Partners

What Are Common Emotional Issues CAR T-Cell Therapy Care Partners Face?

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

Transcript:

Katherine Banwell:

Yeah. What resources are available for CAR T-cell therapy care partners?

Marc Paloma:

So, I work with a variety of local and national organizations that do provide supports for CAR T partners. Some of the bigger national organizations would be like the American Cancer Society or The Leukemia & Lymphoma Society. They can link care partners with support groups for people who are doing caregiving for patients.

Sometimes you do have to do a little bit of research and I think now, especially kind of post-pandemic still, there’s a lot of things that are being done online or through Zoom. So, there – but I do notice, especially locally here in Chicago, things are kind of getting back to where there is some in-person meetings. So, support groups, I think from organizations I think also not only to it – this is something – these are things that support the patient and the care provider both.

And this is something whereas a social worker I can help, there are many different kinds of grant programs like in-kind actual money and funds that are available for CAR T recipients. And the care partners that can help them with cover the cost of transportation for all of their follow-up visits, or they are needing to live locally in lodging or hotels following their CAR T hospitalization. There’s a lot of organizations that can be tapped into that way to get financial assistance or financial help.

And I think lastly also the CAR T companies themselves, I mean, there are – when we started doing this, I can’t even remember here at the University of Chicago four or five years ago, maybe. There were just three or two CAR T companies that were offering CAR T, and now there’s over a dozen. And we do so many now and they’re all different. And as much as I can, I try. But there are CAR T companies that actually also offer patients and care partners that kind of in-kind, kind of support like assistance like financial assistance with food, with lodging, with travel.

So, those are all things, again, I mean that helps the patient, but that also very much is helping the care provider as well because they also need to make sure that their expenses are taken care of, so. I always whenever I’m doing the initial meeting with a patient and the care provider, I always say check back and it’s, again, it’s with their CAR T nurse coordinator, check back with your CAR T nurse coordinator.

See if the CAR T that you are doing, see if that company offers any kind of actual assistance with transportation or with your lodging or whatever. And their patients who are flying from other parts of the country who come here where they don’t realize that their CAR T program actually can cover the cost of their flights when they’re going back and forth. So, yeah. So, it’s things like that.

CAR T-Cell Therapy Care Partners: Tools for Accessing Support

February 22, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Tools /by Kara Rayburn

CAR T-Cell Therapy Care Partners: Tools for Accessing Support from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

Related Resources:

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

What Is CAR T-Cell Therapy for Myeloma?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

Transcript:

Katherine:

What support services or resources are available for care partners of patients who are undergoing CAR T-cell therapy?

Dr. Mehta:

Unfortunately, I have to say that there are not that many support systems existing. It depends on the center most of the time. And, remember, that many of the centers – you know, CAR T is not offered at every community center.

Usually, they are certified centers. So, on an average, patients might have to travel to go to the center, right? So, it’s mainly center dependent. Now – and, you know, like, if I talk about my center, as I was mentioning, that I like to have the caregiver as a part of the process so they are aware what the patient is going through. Second person is – or second team person is our clinic nurse or CAR-T coordinator who actually talks to the patient in depth as well as patient’s caregiver.

Now, if you are living farther away from the center, three hours, four hours, five hours, in that case, where do I lodge myself, whether there is any other support system? We are going to stay here. Where I’m going to eat? Where is the center? Where do I have to them, whether I have to take them daily or not? So, those kinds of information is provided mainly by the center.

And centers also have many other support systems that we can tap in. The most important is to highlight is CAR T is not cheap. It’s very expensive treatment, right? So, there’s an extra step of insurance approval. Well, what is your copay? So, financial toxicity so to speak also come in picture and not only for the patients but their caregiver also.

We need to sit down if they need additional help. What other sources? What are the other agencies or maybe a local church or local community it can help? One other thing that our center has done, which has helped quite a bit, we have a patient ambassador. There was a patient who had gone through CAR T, and he had such an experience that he decided to offer his service to other patients who were going through CAR T. And he is always available.

So, he always – whenever he comes for the clinic visit and says “I’ll be happy to talk to anyone including his family, right, his mother and his father. They’re available that if [they support the patient], the caregiver, we would like to talk to them. And we would like to share our experience. And, if they have any questions, we can share the resources available to go through CAR T because, at the end, it’s a potentially curative option.

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy?

February 22, 2023/in Care Partner Programs, Care Partner Resources, Care Partner Resources Video, Care Partner TK, Care Partner TK Understanding /by Kara Rayburn

Why Is a Care Partner Essential for Patients Undergoing CAR T-Cell Therapy? from Patient Empowerment Network on Vimeo.

How can care partners access support during the CAR T-cell therapy process? Expert Dr. Amitkumar Mehta discusses the support patients may need during CAR T and resources for accessing patient and family support.

Dr. Amitkumar Mehta is Director of the Lymphoma Program and CAR T Program and Medical Director of the Clinical Trials Office at O’Neal Comprehensive Cancer Center at UAB. Learn more about Dr. Mehta.

Related Resources:

CAR T-Cell Therapy Care Partners: Tools for Accessing Support

What Are the Risks of CAR T-Cell Therapy?

How Is CAR T-Cell Therapy Changing the Myeloma Treatment Landscape?

Transcript:

Katherine:

What is the role of a care partner of a patient who is undergoing CAR T-cell therapy?

Dr. Mehta:

CAR T-cell therapy is very important therapy and has evolved as a potentially curative therapy in a relapse setting. It does have a downside. And downside, when I say is side effects, which needs to be monitored closely, and it has to be detected early and intervened early, right? Steroids, as well as tocilizumab (Actemra) or anti-IL-6 treatment, are very, very effective in mitigating some of the side effect of CAR T.

But the whole process is very involved, right? You have a patient identified. Then you go through collection. Some people might get some bridging therapy, then chemotherapy, and then they get admitted. Importantly, after the infusion for two months, some of them could have neurological side effect, and that’s why for label and for safety, the patients cannot drive for two months or operate heavy machinery.

So, the whole process requires a good support. In my opinion, when we screen a patient, that “Okay, somebody’s referred to me, or my patient going through a CAR-T process,” how to make sure that they have a caregiver. And caregiver is immensely important, not only for the safety but also moral support for the patient, right?

Katherine:

Yeah.

Dr. Mehta:

And, importantly, what I make sure is that they’re part of the whole discussion. When we sit down and discuss the whole process, side effects, what’s going to happen, they are there.

They know what their loved one is going to go through. So, caregiver support is immensely important. In some patients, unfortunately, they don’t have a caregiver support. For the sake of safety, we might have to give them opportunity to see whether they can actually secure some sort of support. Maybe their distant family member living in a different state and if they can live with them, or their neighbor, or their close friends. If they can bring them to the clinic visit so that we can also discuss with them the whole process. So, caregiver is a very, very important and vital part of the whole process of CAR T.

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