2. Materials and Methods
2.1. Theoretical Framework
2.2. Participants and Recruitment
2.3. Data Collection
2.4. Data Analysis
3.1. Emphasizing Survival and Cure in Response to Patients’ Expressions of Potential Concerns about Appearance and Function
“[…] the question that I asked when I saw [my surgeon] for the first time was: ‘Will I live?’”
“[…] when I saw the surgeon, the goal was to have an appointment for the surgery as soon as possible. It was clear in my mind, that’s what was needed.”
“[…] one of the things I worry about is, all the time, between now and surgery day, is the cancer getting worse in there, or what does that mean, you know? I don’t know how fast this cancer moves in there.”
“[…] pre-operatively […], patients are, as much as they want to hear about […] how they are going to talk and swallow afterwards […] they have cancer, they want to get rid of it, and this is what their goal is. Their goal is to get rid of the cancer and once they get through that, then we can start focusing more on, not just getting rid of the cancer, but giving them their quality of life back.”
“[…] So essentially, now, the communication [with my surgeon], is not, I’ll tell you [about my concerns] […] no-no, now it’s, OK, the scan, did you see something, you didn’t see anything, thank you, goodbye, I’m leaving, that’s all I want to know. The rest, I am managing […]”
“[…] the first thing is, above all, the lethal side of this thing, we agree, the question that is important for the doctor and for the patient, to know whether I still have my cancer, whether this cancer is expanding or regressing, whether it will be cured, what are my chances of cure, and well, this would be the first thing, it’s vital.”
“The social, psychological, functional aspects [should be addressed], but yes, I understand that, when you are in an emergency situation, you start by patching up the main water leak at home, then after you think about maybe redoing the entire plumbing system […] yes, there is an emergency situation and we are there to address it, you call the firefighters, you don’t have time to think about what color you will paint your living room walls in a year, six months, but yes, if you already have your answer […] it can help you get used to the idea of what is to come. So yes, it would be positive.”
“And then you start questioning yourself, because everything that is related to aesthetics, I told myself, I refuse to be so superficial. But is it being so superficial? Or is it just normal that, hey, how will I be getting out of this, after this whole story? Will I have bandages for three months? Will I…”
“[…] I have patients that were telling me exactly that, ‘I was convinced that I did not care about appearance, but now I find that I look like a monster’. Because this also changes your perception of what’s important. When we, we have some sort of a balance, you tell yourself, I have a choice between living and dying, OK, well, and now, I live, but finally I look like a monster and I don’t like it, after all. I thought that I didn’t care about appearance, but no, I do care.”
3.2. Emphasizing Biomedical Explanations in Response to Patients’ Descriptions of Their Experiences with Changes in Appearance and Function
“[…] there is a patient that I saw, [he had] a transplant done [on the scalp], a good eight to ten months ago […] According to us, it was very nice, it had healed very nicely […] but he still did not have hair on his transplant. And then he asked, ‘Is it going to stay this way?’ And I, at the beginning, I didn’t understand, I told him ‘Well yes, it will pretty much stay like this […] but it’s very nice, it healed very nicely […]’ And he said, ‘Yes, but […] I don’t have hair there.’ And that’s when I understood what he meant […] when the patient asks us certain questions, we have a tendency to answer in a very medical way, whereas the patient […] his question ‘Is it going to stay like this’, we are not exactly answering it […]”
“For me, it’s my personal life, it’s none of their business. […] No, I didn’t talk about it with [my surgeon]. According to me, it’s just, it doesn’t concern them, and then there’s no limitation […] The limitation, I’m the one who imposes it on myself, to say, I still have difficulties with speech, [my surgeon] can’t do anything and he’ll say, ‘But you, you can go ahead, come on, there’s no problem!’ For me it’s the image, I don’t feel comfortable to… face them, there’s always 15 to 20 people…”
“[…] when he said it was beautiful, I said, it didn’t look beautiful to me, you know, it’s not that I, you know, beautiful, that’s not the word to use; they could say, it’s coming along well, it’s going to be OK, it’s progressing, but beautiful ((laughs)), but that’s OK. […] I just got a joke out of it, that’s all. […] They are doctors and they are doing the best they can […] They do what they have to do and that’s it, you know, I don’t expect going there and getting moral support.”
“When we meet with them [before the surgery], we understand that they don’t have the answers to everything. […] But on the other hand, after the operation, they could take a little time ((Inaudible, transcription from the notes: “take the time to sit down with the patient and explain everything, that would make a difference.”)) The trust that it would give. But now you feel like you’re a chunk of meat that was put on a cutting board and that needs to be fixed. It’s really the impression I have, a chunk of meat. So that, it doesn’t change anything in a physician’s life, but the impression that it gives to the patient, it’s ((inaudible.)) […]”
“[…] I’m not doubting the empathy there, I know that my physician, particularly, he was very-very empathetic, it’s someone who had, who was always in a very good mood, and I appreciated it very much […] But for them, there is nothing unusual, there is nothing unusual, patients like you, they see them all day long. So, when you go see them, you say, ‘Well, look, I have trouble eating, I have this,’—‘Ah yeah, that’s normal.’ Yeah, it’s normal, but do you understand that you eat three times a day and I have trouble eating two meals, do you understand? […] There’s nothing mundane about that, there’s nothing mundane about having your [body part] amputated, there’s nothing mundane about having trouble eating solid foods, there’s nothing… it’s not… it’s not mundane.”
“[…] I think that in post-operative follow-up we could improve this aspect […] Whether by listening a little bit more or sometimes by asking one or two more questions, to more precisely answer the patient’s question.”
“[…] you have to acknowledge the patient’s perception of, and I don’t say perception meaning it’s just a perception, I mean their observations, we have to acknowledge what their concerns are and address it and if it’s something that’s rectifiable or something that we can change, then we use every tool, but if there’s nothing we can do we just have to acknowledge it and recognize it and emphasize and support them.”
3.3. The Role of Surgeons in Exploring and Responding to Psychosocial Concerns
“[…] we have other resources [like the nurse navigator], but it’s not with [the surgeons], they are not there for an exchange about our emotions, and it’s okay, like I said. For them, it’s medical and… They barely get by, they’re always overwhelmed, like all the others.”(Patient)
“They are super-technicians that solve a very precise problem. […] For me, what matters most with the surgery team it’s to know that they were doing the best possible job, that they were the best […] For that, they did their job, they met my expectations.”(Patient)
“[…] we only have X amount of time, right, we’re dealing with complex situations, complex health care problems, complex cancer, complex psychosocial issues […] So I won’t deceive myself […] and say, ‘Oh we understand everything that this patient needs, clear cut, and we’ve addressed them all’. The truth is that we probably don’t understand their needs and we have not addressed them all. But I think that’s the reality of trying to practice health care in the setting that we work in and I think that we also rely a lot, we’re lucky that we have [our] nurse navigator […] social workers and our psychologist who help assess and recognize and address some of their needs beyond the direct immediate cancer care.”(Surgeon)
“[…] for me, I think it is both, [appearance] is as important as function, too, especially for a girl, for a female, I think, I’m definitely concerned about appearance, and so, yeah, I worry about it a lot, and I also asked questions about appearance, how it can go after, and that’s definitely something I’m concerned a lot about, yeah. For their response, it doesn’t make me feel anything, good or bad, uh… Yeah, because I know, it’s something that I have to check out by myself, they cannot really give you any surgeon answer about that.”
“[…] It doesn’t mean that we will be able to support the patient in this, but […] ask just one question […] ‘How are you, how are you dealing with […] the new appearance […]? Do you find it difficult […]? Sometimes my colleagues will tell me, we already spent a lot of time, but we ask if they have pain [and] […] we send them to the pain clinic when we are not able to help ease the pain. It’s the same thing in the end, it’s just another aspect. […] [We have] a role to play in this […] to say, ‘Listen, if you need it, it’s important, it’s just as important as the physical side, the control of tumor cells and all that.”
4.2. Clinical Implications
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Appendix A—Interview Questions
- To start, I would like to learn more about your care trajectory at the Head and Neck Surgery clinic so far.
- How were you referred to the clinic? How were you diagnosed? How were you presented with surgery as a treatment option? And how did you decide to have surgery? How are you preparing for the surgery?
- Now, let’s talk more about the changes in your body you have been experiencing due to your diagnosis.
- How would you describe the changes you have noticed in the appearance or the functioning of your body before you were diagnosed? Have they changed since? And what are you experiencing now?
- What helps you cope with these changes? Has the medical team played a role in helping you to cope with these changes?
- I am also interested in knowing more about the interactions with the medical team you have had so far.
- During the consultations that you have had, what were important things for you that you wanted to discuss with the team? Do you feel like you had an opportunity to bring up these subjects and ask the questions you had? Did you get the chance to express the concerns you had?
- How would you describe your conversations with the team about changes in the appearance and functioning of your body related to your diagnosis? And the possible effects of the surgery on your body?
- What information did you receive from the medical team about the possible effects of the illness and surgery on your body? If you have not received any information, what would you like to know?
- And did you ever feel like you needed more information or support?
- Next, I would like to ask you about your experience of preparing for the surgery.
- What are your expectations? What are your concerns? Have you talked about your concerns with the team? And how helpful/unhelpful were these conversations?
- To conclude, I have a few final questions.
- Based on your experience, what suggestions would you have for the team to help people followed at the clinic in terms of adjusting to body changes due to the illness?
- Based on your experience, what suggestions would you have for the team to help people followed at the clinic prepare for the surgery?
- Would you like to add anything to what we have talked about today? Did we leave anything out that seems important to you? Is there anything that we have not discussed that you want to talk about?
- To start, I would like to learn more about how your surgery went and how you have been recovering.
- Would you please describe your experiences while staying in the hospital? What were the body changes you noticed? Has the medical team played a role in helping you to cope with these changes? What was helpful/not helpful in this regard?
- And over the last [two] months, when you were discharged from the hospital and recuperating at home, what body changes have you been experiencing as a result of the surgery? How have you been adjusting to these changes? Has the medical team played a role in helping you to cope with these changes? What was helpful/not helpful in this regard?
- Now that you have had the surgery, do you feel that there is anything that you would have found helpful to know before the surgery? Is there anything that surprised you or that you were not prepared to?
- Now, I would like to know more about the interactions with the medical team you have had since the surgery.
- During the consultations that you have had, what were important things for you the that you wanted to discuss with the team? Do you feel like you had an opportunity to bring up these subjects and ask the questions you had? Did you get the chance to express the concerns you had?
- How would you describe your conversations with the team about the process of recovery from surgery? What information did you receive from the team? Did you ever feel like you needed more information or support?
- Next, I would like to ask you some more questions about your recovery from the surgery.
- To conclude, I have a few final questions.
- Based on your experience, what suggestions would you have for the team to help people followed at the clinic in terms of adjusting to body changes due to the illness and surgery?
- Based on your experience, what suggestions would you have for the team to help people followed at the clinic recover from surgery?
- Would you like to add anything to what we have talked about today? Did we leave anything out that seems important to you? Is there anything that we have not discussed that you want to talk about?
- To start, I would like to understand the trajectory that a patient goes through with you, before and after surgery. Starting from the first time when you meet with the patient, and then up to several years after the surgery, you have several conversations. In terms of communication, I am interested in what you find important to discuss with your patients at different time points in their trajectory.
- During pre-surgical consultations, what is your approach to communicating about body changes? What are important things you want to discuss with patients? What subjects or areas do you usually cover? To what degree does this vary depending on certain patient characteristics?
- According to you, what are the most important subjects or areas for the patient? To what extent do you think they are similar to the things you find important to discuss as a physician? How do you manage discrepancies, if any?
- During post-surgical consultations, what are the most important things you want to discuss with patients? What subjects or areas do you usually cover? To what degree does this vary depending on certain patient characteristics?
- Now, let’s talk more specifically about your communication with patients about body changes, the process of recovery from surgery, and adjustment to body changes.
- How do you address body changes following surgery and the process of recovery and adjustment in your pre-surgical consultations?
- How do you address body changes following surgery and the process of recovery and adjustment in your post-surgical consultations?
- How do you see your role, as well as other team members’ roles, in helping patients prepare and adjust to body changes following surgery?
- How would you describe “good” communication? In your experience, what works well in terms of preparing patients to the surgery and supporting them as they recover?
- And what are challenges when it comes to communicating with patients about the consequences of the surgery and the recovery process? How do you think these challenges might be addressed?
- Would you like to add anything to what we have talked about today? Did you leave anything out that seems important to you?
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|Sex||16 Men, 6 Women (n = 22 1)|
|Age||Ranged from 30 to 89 years old, mean 65, median 65|
|Country of origin and language||18 participants were born in Canada, 2 immigrated to Canada; 14 participants spoke French and 8 spoke English.|
|Cancer site, stage, and treatment||Cancer sites included: larynx, jaw, hypopharynx, nose, tongue, salivary glands, floor of mouth, palate. A total of 10 patients were diagnosed with advanced stage cancer (stages 3 and 4), 7 with an early-stage cancer (stages 1 and 2), and 3 patients had an unknown primary tumor. For 14 patients it was their first head and neck cancer diagnosis, and for 6 patients a recurrence or a second cancer. A total of 13 patients had radiotherapy and/or chemotherapy treatments after their surgery.|
|Family members||During almost all consultations, close family members accompanied patients (partner, children, sibling, or parent). One patient came to appointments alone. A total of 11 patients were married, 3 were divorced, 2 were widowed and 4 were single.|
|Education and work status||13 participants had a high school or a college diploma, and 7 had a university degree. A total of 14 participants were retired, 3 were working part-time, and 3 were working or studying full time.|
|Family income||Ranged from 20,000–39,000$ to over 100,000 $/year, median 40,000–59,000 $/year.|
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