Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, I'm here at ONS Congress, and I'm joined by Colette Baudoin. Thanks so much for coming on today.

Colette Baudoin, PhD (c), MSN, RN, OCN, CNE: Thank you for inviting me.

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

Ms. Baudoin: Sure, so my name is Colette Baudoin. I am full-time faculty at Louisiana State University (LSU) Health Sciences Center and the New Orleans School of Nursing. I am also a PhD student, which is actually the reason that I had that poster presented that you were looking at.

Oncology Data Advisor: Awesome. So, your poster was on the lived experience of body image in women undergoing active treatment for head and neck cancer. How does cancer treatment impact women's body image, particularly for those with head and neck cancer?

Ms. Baudoin: It was actually really interesting, because first of all, looking at women with head and neck cancer is very specific because it's not really a cancer that women get a lot. It's mostly a male-driven cancer. As women would know, body image for women is a lot different than it is for body image in men. I felt like when I looked at the literature, there was a lot that was missing as far as trying to address the needs of women in particular. I wanted to make sure that I was able to actually listen to them and see what they wanted to do.

A professor and I talked about it and felt like this was a good way to go. We would start with doing just a qualitative study, talking to the women that had experienced head and neck cancer and looking at not just body image as a physical thing, but also as more than that, because it is more than that. As a woman yourself, you know it's more than just how you look. It's how you feel about how you look and how it impacts what you do every day. It has psychological and social impacts that feed into how you feel.

Oncology Data Advisor: Definitely. What were some of the questions and themes that you looked into?

Ms. Baudoin: Some of the questions were basically looking at how it impacted them. What did they have to change as far as what they were doing and how they experienced their life? We asked them about, first of all, how they were diagnosed. "How did you find out? What made you have to go to the doctor to see what was going on? How has it changed your daily routine? What has happened as far as your family? Who has been your big support system? Who has been the one that you can call on when you need to? Were there particular times when you felt that you weren't being heard, like you had things that weren't being addressed?" I think that was important, because we're trying to address everything that has happened.

Oncology Data Advisor: What were some of the themes that you uncovered by asking these questions?

Ms. Baudoin: I broke it down, again with the support of my faculty advisors and such, and we found three overpowering themes. You could see them outlined on my poster at Congress. One of the themes for patients was being and becoming, seeing themselves as a changed person. What physical things happened that made them see themselves potentially differently? We gave the women a chance to express that. Some of the things that had to do with physical changes involved social or body image changes that they had experienced. It was really interesting, more than I had actually thought about. I think as a woman myself, I began to realize just how much other things impacted my body image, and I don't have a debilitating, potentially life-altering diagnosis. That, for me, was a huge thing.

The other thing we broke down was inward feelings and meanings, which had a lot to do with the stigma that attached. Some of the women—not all of the women, but some of the women that I interviewed—actually had a human papillomavirus (HPV) diagnosis. There were feelings that went along with that. Some of them had been smokers or had used alcohol, and there were a lot of feelings of guilt and the feeling of being stigmatized. That, again, impacted how they felt. When somebody asked what kind of cancer they had, they said they sometimes didn't want to tell them because of the generalizations that go along with it.

Then the final one, which is really of particular interest to me as a health care provider and as a researcher, is navigating the journey. That's where I wanted to make sure I was able to tap into the things they found that were helpful for them and that made a difference for them, so that we as health care providers can actually learn from that and try to provide resources, interventions, teaching strategies, and support groups that are tailored more to what they need and not what we think they need.

Oncology Data Advisor: Right. Along these lines, are there any resources nurses can look to help promote body image for their patients?

Ms. Baudoin: That's a big problem, because we all look to the physical changes, and there are multiple resources available for physical changes, like wigs if they lose their hair. The ironic part of it is that for many of the women, the chemotherapy doesn't necessarily make them lose their hair. It might thin a little bit, but they said, "Oh, you know what, they didn't tell us that you lose that four-inch band around the back of your neck where the radiation burns, so I can't wear my hair up anymore, can't do things like that."

I think the physical things are different, and I know as comprehensive cancer centers with Commission on Cancer (COC) accreditation, many people do have psychologic counselors. But what they don't have in particular are other women who have gone through this. I think that's the biggest thing. Actually, every woman I talked to during the interviews had at some point in their diagnosis reached out to online support groups where they were able to connect—not with the support group as a whole, but they found women who were in the same trajectory and at about the same pace of the course of treatment. They are able to connect with them, and they consider them friends as well as co-cancer survivors.

I think that as health care providers, we want to think that we can help do anything. But the other important thing with that is only one of those women actually reported that their health care provider had suggested a support group, which to me, is reaching a knowledge gap and a practice gap for us. It's important to recognize that you may only get a couple of women with head and neck cancer a year, and we don't know what they go through every day. It doesn't just end when they finish treatment; that's the whole thing. My recruitment data and my inclusion criteria ended three months after treatment ended, but it doesn't end there for them. Actually, at that point, many of them were still really sick and were trying to go through things or just getting back to their feet.

I was able to get institutional review board (IRB) approval to reach out to the online support groups to do some recruitment, because of course that was a problem for me since it is a small population. It was kind of eye-opening and ironic that a lot of the women who had been out of treatment for several years said, "You don't understand. You need to include us in this research study, because it's still going on." I said, "Okay, hold that thought. Hold that thought for a minute, and I'll be back with you after I finish this dissertation and then we can hit that." I think it gave them a platform to say, "Hey, we want to be recognized. We're not like the men that get this diagnosis. We're not the same. We are resourceful. We reach out to try and find these answers, and we want to be proactive in our care."

Oncology Data Advisor: Absolutely. This is really such important research. Thank you so much for explaining all of it.

Ms. Baudoin: Yes, thank you so much for inviting me to. I feel like we always want to do better for our patients, and I think that's one of the important things that we really try to do as health care providers. If we didn't, we wouldn't be in this field. I think it's important just to recognize the fact that there are special needs for special populations, even if it's a small population. We might not have that exact resource available that they need, but we have to learn to be resourceful ourselves, just like these women are resourceful. We can recognize the fact that we need to think outside of our box too and recognize that they are going to need the same support that other people need, but maybe more or maybe a little bit different.

Oncology Data Advisor: Absolutely. Well, this is great. Thank you so much for sharing all of this.

Ms. Baudoin: Thank you, thank you for having me.

About Ms. Baudoin

Colette Baudoin, PhD (c), MSN, RN, OCN, CNE, is a Clinical Instructor of Education at the Louisiana State University Health Science Center's School of Nursing in New Orleans. She has worked in multiple oncology inpatient and outpatient roles for nearly 20 years and is currently a PhD student at LSU.

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