Caring for Caregivers With Natalie McAndrew, PhD, RN, ACNS-BC, CCRN-K

Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, we're here at ONS Congress, and I'm joined by Natalie McAndrew. Thank you so much for joining today.

Natalie McAndrew, PhD, RN, ACNS-BC, CCRN-K: Thank you so much for having me.

Oncology Data Advisor: Would you like to introduce yourself and share what your work focuses on?

Dr. McAndrew: Absolutely. I worked for a long time clinically as a Clinical Nurse Specialist in the intensive care unit (ICU). When I was in the intensive care unit, I was really interested in the bone marrow transplant (BMT) population. I saw some difficult end-of-life situations and so forth. I pivoted to that population in terms of my research trajectory. My research focuses on families and family caregivers, and right now that is where the majority of my work is focused.

Oncology Data Advisor: You presented a session yesterday titled Dimensions of Caregiving: Emotional, Physical, and Financial Considerations of a Cancer Diagnosis. What are some of the particular impacts that caregivers face in these areas?

Dr. McAndrew: In working with caregivers now as a researcher, I think people, unless they've really experienced it, don't understand how caregiving affects every aspect of your life. We often think about the tasks, but we don't think about how that's impacting the person who is the caregiver. We often don't realize that sometimes when those caregiving responsibilities become so great, the caregiver loses sight of who they are and what's important to them, because they're not able to nurture that.

The other part of the caregiving experience that's not talked about much is that financial impact. Cancer treatment is expensive, but what about all the lost work time for caregivers and the impact that has in terms of just the day-to-day expenses and running a family? All of these things really, really add up. I don't think we talk about that much in terms of caregiving, or how much the caregiver is really saving the health care system as well.

Those are a couple of the highlights from yesterday that we hope that the viewers would take away with them and have a greater understanding. I found out that a large portion of our audience are also family caregivers in addition to being professional caregivers. I think we don't even realize how many of us are in that situation.

Oncology Data Advisor: That's true. Are there any research directions that are underway or that are needed as far as improving support for caregivers?

Dr. McAndrew: I work with Allison Applebaum, and she is a caregiving expert who developed the intervention called Meaning-Centered Psychotherapy for Cancer Caregivers. It's a really amazing intervention that targets one of the symptoms I was talking about yesterday, which is existential distress and that idea that the caregiver loses sight of themselves. This is a supportive intervention that helps caregivers find their way and make sense of the caregiving experience. That's a focus for me right now. I think that we have opportunity to make some adaptations to it, especially for the BMT population, just to make it eventually more scalable and so forth.

I also think that from an intervention perspective, there are so many things that we need to do for cancer caregivers. A lot of it relates to preparation and support. I think a lot about health care systems and the fact that support is not the same everywhere you go. There are a lot of places that just don't have the infrastructure to support caregivers. I worry a lot about that. We do give people lists of things, like, "Here's some resources." I had a caregiver tell me, "I just kept going from website to website and it wasn't helpful." We were able to get him in a support group, and I think that really was helpful to connect with other caregivers.

But it's hard to get all these support groups running, and support groups aren't for everyone either. I think we have to work with health care systems to develop what that infrastructure should look like and target the microsystem and macrosystem really move in that direction. There are just so many gaps. I do get tired of just saying, "Well, the health care system's broken." I get that it is, but in the meantime, we can't let these people suffer. We cannot let caregivers and patients suffer because the system is broken.

Oncology nurses are so fantastic. All these nurses go above and beyond all the time, but I worry about nurses too, because it's very hard when you're trying to do it all by yourself. That's what I think a lot about. Yes, there are a lot of research priorities, but I think my bottom line here is that we need to take what we learn from research and get it translated. That's another gap where we have got to do better. People need to do that work.

Oncology Data Advisor: Definitely. Along these same lines, how can nurses serve as advocates for caregiver health and wellbeing?

Dr. McAndrew: Yes, it's a great question. My colleague, Tamryn Gray, has done all this policy work, really getting more engaged in policy. I think that can be at any level, whether that's in your health care organization, getting involved with your patient and family advisory groups and starting to make sure that the hospital is creating policies that are family-inclusive, or getting involved in state level policy and federal policy. All of these things are important.

I think it's daunting sometimes if we haven't had experience in that area, but we can link up with people who are doing that work. I found a few people who were doing some work on the Care Act in the state where I am, which is Wisconsin. We haven't passed the Care Act as of yet, which is difficult and concerning for caregivers. But by linking together and finding other people with that passion, we're always better together than alone. That's kind of my philosophy on that.

Oncology Data Advisor: Absolutely. Well, thank you so much for sharing all of this today.

Dr. McAndrew: Absolutely. This was great.

About Dr. McAndrew

Natalie McAndrew, PhD, RN, ACNS-BC, CCRN-K, is an Assistant Professor at the University of Wisconsin-Milwaukee and a Nurse Scientist at the Medical College of Wisconsin at Froedtert Hospital, where she supports the development of nursing research. Throughout her career, she has studied end-of-life decisions in the ICU, nurse-promoted family engagement, and family caregiver experiences during illness after hematopoietic stem cell transplant. Dr. McAndrew is currently developing palliative-based interventions for family caregivers of patients with serious illnesses, and she is copiloting an intervention focused on psychotherapy for cancer caregivers of patients who have received stem cell transplant.

For More Information

Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.