Tag Archive for: family members

Care Partners | Tools for Self-Care and Managing Emotions

 Why is it essential for care partners to have self-compassion when caring for a loved one? Tiffany Richards, a myeloma nurse practitioner, helps care partners in understanding why they should practice self-care, recognizing the signs of burnout, and learning about support resources available to them.

Tiffany Richards, PhD, APRN-BC, AOCNP is a Nurse Practitioner in the department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center.

See More from The Care Partner Toolkit: Bispecific Antibodies

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Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partners Should Feel Comfortable Voicing Concerns

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Transcript:

Katherine Banwell:

Being a care partner can be taxing mentally and physically, how do you encourage care partners to ensure that they’re taking care of themselves during a process?  

Tiffany Richards:

I think it’s really important for our care partners to take time for themselves because if you’re investing all of your energy into the patient, that’s going to deplete you.  

And when you’re depleted, you’re just being set up for you to get sick or for you to have a problem. And so, it’s important to take time, whether that’s meeting your friends for lunch or dinner or something, making arrangements for somebody else to come and stay with the patient. If you don’t feel comfortable leaving them alone, then engage the people around you. I think it’s important to create care teams, not just focusing just on one person that’s dedicated to providing care because if you do that, then you don’t have anybody else brought in that can provide respite. And we all need respite. We can’t always be caregiving 24 hours a day. If I had to caregive 24 hours a day, I’d be exhausted. And so, it’s important to have a care team.  

Look at the people around you, whether that’s friends or whether it’s some sort of religious activity, other family members, and creating a team so it doesn’t fall just on one person. I think you can have one person be like the main reference point to get to information, but then bringing everybody in so that you can get the care that you need for yourself. It’s really, really important. 

Katherine Banwell:

What are some signs of burnout and how are they managed? 

Tiffany Richards:

I would say it’s exhaustion, difficulty concentrating, just feeling depleted; where you feel like all of the energy that you have is being drained out of you.  

Those would be signs that I would be concerned about and say, “You need an intervention.” So, be on the lookout for that. I remember my mom was caring for my dad, and she was getting burnt out by it all. And so, she lost weight because she wasn’t able to eat because she was so stressed. And so, making sure that you’re taking care of yourself is so, so important. I just can’t even stress that enough. 

Katherine Banwell:

You mentioned some things that the care partner can do to take care of themselves, but what about handling emotions and anxiety? Do you have tips for them? 

Tiffany Richards:

So, I think in the world that we live in, and I tell a lot of my patients this, I think all of us could probably use some amount of therapy just to deal with life stressors. The world is a very stressful place to live in.  

And I think finding somebody that you can talk to is so important. Having a therapist allows you the opportunity to talk to somebody who has no judgement, who’s not going to give you their opinions of what you should do. I think that’s important because it offers somebody outside of the situation for you just to be able to download on. And that is so therapeutic; I can’t recommend that more. I really recommend counseling for people just because we all need that person that’s not in the middle of the situation that you can just download on and say, “This is what I’m feeling.” They’re not going to be judging you and saying like “That’s right,” or “That’s the wrong way to feel,” or giving their advice on things.  

And people are well-meaning by giving advice and giving their perceptions of things, but it might not always be helpful to you as a caregiver. And so, having that other person there can be really beneficial. 

Katherine Banwell:

Are there support resources available for care partners? 

Tiffany Richards:

So, there are. I know International Myeloma Foundation has some caregiving resources. I think maybe the Leukemia Lymphoma Society has some.  

There’s probably not enough as there needs to be, but there is some more information coming out. I think concerns about the caregiver and care partners is becoming more frontline as patients with myeloma in particular are living longer, and all patients with cancer are living longer. But they’re living longer on therapy. It can be hard for care partners because it’s not just this six-month period of time. 

It’s like this indefinite period. And so, there’s more things coming out, but I would definitely say probably the best resource is finding somebody that you can talk to.  

Katherine Banwell:

Is there anything you’d like to add about caring for someone who is being treated with bispecific antibody therapy? 

Tiffany Richards:

Yeah. I think knowing as much as you can about how the drugs work is really important, and then also what you can do to help manage and mitigate some of the side effects is important. And then, making sure that you understand the schedule, and as well as the schedule for the supportive medications is also really important. When we transition patients from an academic center to community, we usually have a touchpoint with that community provider. We provide instructions. 

So, I think it would good to ask the academic center for a copy of the letter for the communication that’s being given, so that everybody is on that same page, can be really, really helpful. 

Kimberly Smith: Why Is It Important for You to Empower Patients?

 
Why is it important to empower patients? Hematology-oncology nurse practitioner Kimberly Smith from Duke Health shares her approach to moving patients from a place of helplessness to becoming key players in powerful decisions.
 

 

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MPN Care Barriers | Gaps in Patient-Centered Care

MPN Care Barriers | Gaps in Patient-Centered Care

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

MPN Treatment Barriers | Impacts and Solutions for Healthcare Providers

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?

Dr. Akriti Jain: Why Is It Important for You to Empower Patients?


Transcript:

Kimberly Smith:

I empower my patients by giving them information, education. I try to educate each one of my patients, their family members. It’s very important to me, because I’ve been on that side. And I know how it is to be sitting there and not understanding anything that’s going on and not knowing where do I go from here, how is this treated, how is this person going to be managed, what can I do to help, and feeling helpless.

I want my patients and their families to always feel powerful. I want them to always feel like they are part of this team. Nobody’s just making decisions for them. They have a voice, and it is our job to advocate for them and help them strengthen their voice. That’s why it’s important to me.

Dr. Nicole Rochester: Why Is It Important for You to Empower Patients?

Dr. Nicole Rochester: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

How can you empower patients, and why is it important? Expert Dr. Nicole Rochester, founder of My GPS Doc, discusses methods that she employs to empower patients, how it alters the patient role, and the impact on their care.

See More from Empowering Providers to Empower Patients (EPEP)

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Dr. Radhika Gogoi: Why Is It Important for You to Empower Patients?

Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

Dr. Michael Kelley: Why Is It Important for You to Empower Patients?

Dr. Andrew Hantel: Why Is It Important for You to Empower Patients

Dr. Andrew Hantel: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Nicole Rochester:

The primary way that I empower patients is really by making sure that they understand that they are empowered and that they are literally the center of their own medical team. I think that in today’s healthcare environment, many patients and their family members kind of defer to the experts in the room, and that’s wonderful.

And yes, those of us who are healthcare professionals have a lot of knowledge and expertise, but I always like to remind patients and family members that they know much about their own unique medical situation, about their body, about their symptoms than we do, and so I really empower them by helping them to embrace that role of being the center and sometimes the leader of their medical team.

I empower them by encouraging them to ask questions in healthcare settings, to not be afraid to speak up when they have concerns about their health or about the treatment or the management of their condition. And ultimately, I really like to just elevate the role of the patient and those who support them. And I think that, ultimately, that allows them to not only show up for themselves more powerfully, but also ultimately to receive better care.

Do AML Patients Receive Allo or Auto Stem Cell Transplant?

Do AML Patients Receive Allo or Auto Stem Cell Transplant? from Patient Empowerment Network on Vimeo.

What type of stem cell transplant do AML patients receive? Expert Dr. Sara Taveras Alam from UTHealth Houston explains stem cell transplant for AML care and advice to help patients locate a bone marrow donor match.

[ACT]IVATION Tip

“…encourage family members and friends to enlist on the national and international available donor registries. I believe that when a patient gets diagnosed with AML, everyone in their immediate circle wants to help, and I tend to see family members and friends offer their bone marrow for transplant purposes. The likelihood of a friend or a distant relative being a match is very low. We know that siblings may have a high chance of being a match, parents or kids may be a half-match by definition, so there’s a higher chance of some unrelated person on the registry being a match to the patient than a distant relative or friend.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED AML

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How Can AML Patients Benefit From Shared Decision-Making?

How Can AML Patients Benefit From Shared Decision-Making?

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations

Advancing Equity | Research Initiatives in AML Disparities Among Black and Latinx Populations

How Do AML Patients and Outcomes Differ by Population Groups?

How Do AML Patients and Outcomes Differ by Population Groups?

Transcript: 

Lisa Hatfield:

When you mention a stem cell transplant, are those allogeneic stem cell transplants where they receive a donor’s stem cells, or are they the autologous where you take some of their stem cells at a certain point and then give them back to the patient?

Dr. Sara Taveras Alam:

So for patients with acute leukemia who require a stem cell transplant, it is an allogeneic stem cell transplant, so it does have to be a transplant from a matched donor, and the first pool of possible donors tend to be the patient’s siblings. If they have brothers or sisters from the same mom and dad, those are the possible first-line donors and are tested to see if they’re a match to the patient, and second to that, then the transplant institutions look into a donor registry.

So my activation tip for that question is to encourage family members and friends to enlist on the national and international available donor registries. I believe that when a patient gets diagnosed with AML, everyone in their immediate circle wants to help, and I tend to see family members and friends offer their bone marrow for transplant purposes. The likelihood of a friend or a distant relative being a match is very low.

We know that siblings may have a high chance of being a match, parents or kids may be a half-match by definition, so there’s a higher chance of some unrelated person on the registry being a match to the patient than a distant relative or friend. However, we could always pay it forward, and if we encourage our friends and family to enlist on these registries, it is very beneficial for our population.

Share Your Feedback About [ACT]IVATED AML

Who Is on a Patient’s CLL Care Team?

Who Is on a CLL Patient’s Care Team? from Patient Empowerment Network on Vimeo.

Who are the members on a chronic lymphocytic leukemia (CLL) patient’s care team? Dr. Matthew Davids explains the members of the healthcare team – and shares advice for ensuring the patient receives complete information for optimal care.

Dr. Matthew Davids is Director of Clinical Research in the Division of Lymphoma at Dana-Farber Cancer Institute. Learn more about Dr. Davids here.

See More from Engage CLL


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An Overview of CLL Treatment Types

Transcript:

Katherine:

When a person is diagnosed with CLL they have a whole healthcare team. Who’s typically on that team?

Dr. Davids:

It’s definitely a multidisciplinary team.

Usually there’s an oncologist-hematologist who’s leading the team as a physician, but there’s a very large team of other people who are involved, whether it’s an advanced practice person such as a nurse practitioner or a physician’s assistant. They’re often very closely involved with the day-to-day patient care. There’s nurse navigators in some places that can help with getting access to these novel agents and with looking into clinical trial opportunities. There are pharmacy folks who are very helpful sometimes in checking in on side effects, and advising on dosing, and so forth.

That’s more on the provider side of things. But, of course, the care team really includes the caregivers for the patient, whether it’s family members or friends, who are really a crucial part of this. The field is very complicated, and one of the challenges with COVID recently is that I’ve always invited family members and friends to come to visits with patients, because I do think it’s helpful to have many people listening. And that’s been hard because we’ve had to restrict visitors usually to either no visitors or one visitor because of COVID precautions.

Even if that’s the case, you can still have people dial in by phone or use technologies like FaceTime to try to have them there with you, because I think having that extra set of ears can be helpful as you hear all this information coming at you from your oncologist.