Chapter 12: Developing Education Materials that Reflect a Deep Understanding of Cancer Care
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Description
Ms. Villejo first speaks briefly about assuming directorship of the Patient Education Office in 1985, noting that MD Anderson was the first cancer center to form such an office (1979). She notes that this set the priority to focus on patients and the development of materials was facilitated by the institution’s multi-disciplinary focus on disease sites.
Ms. Villejo then talks about the personal view on cancer that she developed as projects took her to various clinics at MD Anderson and as family members were diagnosed with cancer. She talks about the challenges of providing appropriate educational materials to patients who are going through and emotionally confusing period .
Identifier
VillejoL_02_20150521_C12
Publication Date
5-21-2015
City
Houston, Texas
Interview Session
Louise Villejo, MPH, MCHES, Oral History Interview, May 21, 2015
Topics Covered
The University of Texas MD Anderson Cancer Center - Building the Institution; Discovery and Success; Human Stories; Offering Care, Compassion, Help; Patients; Cancer and Disease; This is MD Anderson; MD Anderson Snapshot; Professional Values, Ethics, Purpose; MD Anderson History; Formative Experiences; Information for Patients and the Public; Building/Transforming the Institution; Multi-disciplinary Approaches; Institutional Processes
Transcript
Tacey Ann Rosolowski, PhD:
I’m sorry. [The recorder is paused.] All right. We are recording again. And we’ve been—took about a seven-minute break. And we have a little noise in the background, but we’re going to just power through it I guess. (laughter)
Louise Villejo, MPH, MCHES:
Well, you said it was a typewriter. I was like kids don’t know what a typewriter is anymore.
Tacey Ann Rosolowski, PhD:
I know. I know. And I know there is a typewriter in the room across the way. And it sounds just like a Selectric.
Louise Villejo, MPH, MCHES:
Yeah, it does, it really does.
Tacey Ann Rosolowski, PhD:
It does. My mistake, it’s up in the ceiling. Hopefully we will not have the ceiling collapse and be inundated with the rain from this morning. Well, last time we talked about your role as health education coordinator. And then we also branched out and covered a number of activities that were under—that you were responsible for when you had already been promoted. But I wanted to ask you formally about the directorship of patient education and when that actually happened. I couldn’t figure out the date of that particular promotion.
Louise Villejo, MPH, MCHES:
I believe that was probably about ’85. Yeah, I’m pretty sure it was in 1985. The person that was director, Kathy Crosson, who really brought tremendous organizational skills, infrastructure, great experience in health education, program planning, just really I think set the stage for us to build on.
Tacey Ann Rosolowski, PhD:
What did you learn from watching her?
Louise Villejo, MPH, MCHES:
She was very organized, very methodical. Very much into collaboration. And basically what she did when she came was she went and interviewed all of the leadership and a lot of the leadership in clinical staff, like what we call now the CADs were nurse managers, and directors of social work and so forth and so on, to get their idea of what they thought was needed in a patient education program, or what was available already. Because obviously they were doing patient education. It just wasn’t an organized initiative as far as institutionwide. And even center-specific or for treatment. And so she did the needs assessment. And that’s basically part of the process health educators do is you do a needs assessment. And then you look at the design, program planning, and evaluation, and go on from there. So that really—and then as I mentioned we were organized under Dr. Conrad. It was the first comprehensive cancer center that had an organized Patient Education Office. And so that started. And there were only herself as director and a health educator and the secretary. And that really started the priorities of the patient education program. And so when I came on, that was in ’79, I came on in ’82. They had started organizing patient education committees in all the different centers.
Tacey Ann Rosolowski, PhD:
I’m sorry. Now 1979, was that when the office was actually started?
Louise Villejo, MPH, MCHES:
Mm-hmm.
Tacey Ann Rosolowski, PhD:
I see, OK, wow. So you began focusing on the disease sites.
Louise Villejo, MPH, MCHES:
And treatment, because one of the things that I worked on was—so we had areas of responsibility. So one of my areas of responsibility was chemotherapy. And so we did a needs assessment. What is the patient being taught? What does the patient need to be taught? And that was like we used a lot of survey instruments and we still do throughout the institution. But that formed the basis of the program. And then we started with the materials development, the chemo booklet.
Tacey Ann Rosolowski, PhD:
Now you mentioned actually in that e-mail you sent to me about some areas you wanted to talk about that you had some really strong memories of chemo and of the chemo unit. Maybe you could talk about that now.
Louise Villejo, MPH, MCHES:
So that was one of my areas of responsibilities. And I remember I would obviously go to the area. And at that time the first floor of what is now the—starts in the Clark Clinic and goes back down through where Social Work is. That corridor and then down toward I think the Research Medical Library, those two corridors, all the clinics were on that corridor, that was it. Well, there were some also on the different levels. But there were a number of clinics. So there was chemo, there was Infusion Therapy, there was Immunotherapy, there was I believe it was Sarcoma. Now Head and Neck and Breast and those were on the floors above. But I mean you could just really walk through the institution and work with everybody out in the hallway back then. And one of the rooms—
Tacey Ann Rosolowski, PhD:
From what I hear they did. (laughter)
Louise Villejo, MPH, MCHES:
Mm-hmm. Absolutely, absolutely. So I mean the chemotherapy room was probably about—in my memory it was about this big. So that’s two, four, six, eight, ten, twelve, fourteen, sixteen, eighteen, yeah. Probably about twenty by—this is about fifteen. So—
Tacey Ann Rosolowski, PhD:
About fifteen by twenty feet. Wow.
Louise Villejo, MPH, MCHES:
Mm-hmm. Mm-hmm. And then the chairs were here and they had their IV poles. And to my memory I don’t think there were more than ten people in that room. And that’s where they had the chemo. And then there was a room that was smaller than that that just had a few beds. And that’s where the—I mean we have the bed area now too. But that was also part of it. And so we would work with the nurses and talk to the patients about their chemo, their experience. And we started a chemotherapy class. And really until about ’95 we didn’t have a patient education classroom. We would use whatever room was available. And at the beginning the room that was available was a room that was where the—think they call it the AT&T Auditorium now. Right there on that same corridor there was a room right next to it that was underneath the—I don’t know. I just remember that it had a slanted roof. So it seemed to be like underneath the stairs. But it wasn’t underneath the stairs, it was right next to the door to the auditorium. So that’s what we used for our chemotherapy classroom. We also—later on we had a smoking cessation class there too. But then when—chemotherapy area was called Station 19. Station 19 was moved around the corner I think after the Clark Clinic was opened. Not into the beautiful facility they have now, but it was definitely nicer, and then we had a classroom there. But it was always a struggle. It wasn’t a dedicated classroom. It was something that if there was a doctors’ meeting or whatever we would get kicked out. So that’s with our program development. But I definitely remember that. And I also remember sometimes because it was so small at that time, you would develop relationships with the patients. And people would come to my office. [redacted]
Tacey Ann Rosolowski, PhD:
Was there anything that you learned from interacting with the patients in that way that influenced how you prepared the materials?
Louise Villejo, MPH, MCHES:
Well, I definitely wanted to make sure that they were available and understandable, and if it was a skill that they needed to develop, that we were able to do a video that went along with that. I mean that really helped me when I had family members with cancer. And as long as you work here, and even if you’re developing the materials, when it’s happening to you or your loved one you just don’t remember anything anymore. And you just are searching for that specific information. [redacted] As much as you can talk to people and teach people, they need something when they go home, because there are so many steps. And you’re thinking well, did she say to do this or do that, on the fourth step. So it’s just so important to have all that reinforcing material. Even ten, fifteen years ago I had a girlfriend that came here with breast cancer. And I went to the central venous catheter class with her. And I had worked with that group forever. And I was a nervous wreck. Just to think that oh my gosh, now—I knew all—sometimes you know too much. So I knew if you did something wrong you could really cause some harm. And I was just a wreck. And I was sitting in there. Tiny little—like I said, we didn’t have the support of good classroom space back then. And sitting in there. And we had helped prepare the materials and everything. But I was thinking these people in front of me don’t speak English. What are they going to do? I’m scared to death, and I understand what’s going on. I wrote some of this. And I’m still like petrified of having to do this. So I bring those experiences, personal experiences, as well as knowing how important to me it is to have information presented in different ways so that you don’t have to be reading tomes of information to get exactly the information you need at the right time. And that’s what we really try to work with the clinical staff to do. And it’s so hard to do because we’re such a big institution, giving patients what they need at the time they need it. Sometimes if you don’t give it to them at the beginning, we don’t have a clear process as to knowing exactly when they need it. So you give it to them then, and say, “You don’t have to read this cover to cover, but here are the tabs. Here’s this information and here’s that information. So later when you need it you’ll know that it’s here, and you don’t have to be digging through it.” So that’s one of the little things that we try to do is break it down, make it simple, make it presentable, easy to read. Because there’s just a lot of moving parts. I mean my poor little mom passed away about a year and a half ago now. And again I’ve been here. Look how long I’ve been here. And there are just so many moving parts. You think you’ve got this down, and then you’re like oh my God, I forgot that.
Tacey Ann Rosolowski, PhD:
Well, it’s when you’re in the moment and you’re actually dealing with the stress of the disease, the upsetment of the person who’s the patient, the family that may be in shock about a diagnosis or a second opinion and—
Louise Villejo, MPH, MCHES:
And the medications. There’s like tons of medications and they’re forever changing. And one of our patients in the Patient and Family Advisory Committee said, “I went through all this and I went home and nobody called me. I was just left after surgery.” So how simple is that? Just call the person. Are you OK? I know when my aunt had breast cancer they did call her after surgery, see if she had any questions. I mean that is so important to have that connection to the institution so you don’t think like oh my God, now I’m after surgery and what now. You count so much. And of course you see in the patient comments so many people are so grateful for the wonderful people that we have here. And so they are in this MD Anderson cocoon. And then they go home and it’s like what do I do now. So a lot of the things that we have are available to patients when they go home because it is so important to have that reinforcing information.
Tacey Ann Rosolowski, PhD:
We’re actually a little after 3:00. And I do need to close off for today to do something else. But I wanted to thank you for your time today.
Louise Villejo, MPH, MCHES:
Thank you.
Tacey Ann Rosolowski, PhD:
And really appreciated your discussion about the videos and that personal experience, because I mean I’ve not had the experience of holding somebody’s hand through the disease. I think a lot of people haven’t. And so understanding what is it that people are really confronted with, it helps me understand, will help other people understand exactly how important these educational materials are.
Louise Villejo, MPH, MCHES:
Well, somebody like me, I mean bibliotherapy. I read about, I look into it. I research. But then when you’re in that moment, like I knew from the diagnosis the cancer that my mom had was not good. And I knew that she would go through treatment but it was not going to save her. And people would tell me, “Oh, here’s an article you might want to read.” They said, “Well.” And then when I saw that hesitation, I would not read that article. I mean I did a lot of research and I knew what the prognosis was and so forth but I—and that’s what we tell patients too. It’s important to be involved in your care, it’s important to ask questions, but people that don’t want to do that, it’s OK too, it’s OK too.
Tacey Ann Rosolowski, PhD:
Yeah, you have to manage your own stress.
Louise Villejo, MPH, MCHES:
Yeah. It’s OK, you don’t have to be science detective here. We’ll be supportive but we have this resource in case it’ll be helpful to you.
Tacey Ann Rosolowski, PhD:
Well, thanks very much for your time today.
Louise Villejo, MPH, MCHES:
OK, absolutely.
Tacey Ann Rosolowski, PhD:
Yeah, and I’m turning off the recorder at about three minutes after 3:00.
Recommended Citation
Villejo, Louise and Rosolowski, Tacey A. PhD, "Chapter 12: Developing Education Materials that Reflect a Deep Understanding of Cancer Care" (2015). Interview Chapters. 1527.
https://openworks.mdanderson.org/mchv_interviewchapters/1527
Conditions Governing Access
Redacted
