licensed clinical social worker Archives

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.

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 You Ask the Healthcare

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.

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