In total, 10 participants were interviewed, and their characteristics are presented in Table 2. The analysis yielded four categories: (1) bodily symptoms, (2) effects on life, (3) support from the healthcare system, and (4) strategies to handle life and symptoms. These categories were based on ten subcategories, as demonstrated in Fig. 2.

Table 2 Participant characteristicsFig. 2

Flowchart description of the four categories and ten subcategories obtained from the data analysis

Category 1.

Bodily symptoms was created from the subcategories of Problems related to eating and trismus, Oral hygienic and motor problems, Pain experience, and Bodily symptoms not related to trismus, eating or pain.

Problems related to eating and trismus

Study participants mainly expressed having difficulties related to eating and hyper- or hypoproduction of saliva. Xerostomia was an ongoing complaint for at least four participants. Dysgeusia in the post-treatment period was a recurring issue with a variable symptom description. For instance, one participant avoided sweet foods because of the loss of taste for sweetness, while another could taste sweetness the best and preferred sweet foods. A recurring problem among participants almost a year after treatment completion was the inability to drink wine because of feeling a burning sensation in the mouth or a severe sensation of dryness whereas beer was described by some to be more pleasant to drink. For one participant, eating difficulties were also caused by dental loss. The affected participant was still awaiting dental treatment at the time of the interview (13 months post-treatment). Trismus caused problems with speaking, eating, and kissing. One participant, who was interviewed 8 months after finishing combined surgical and radiotherapeutic treatment, suffered from trismus so severe that he/she could only eat mashed foods and avoided meat completely. However, for the remaining participants, trismus seemed to be a complication that was better tolerated than dysgeusia and dryness of the mouth.

“If I want to eat a hamburger or bite an apple, that’s when it’s the most burdensome so to say. But other than that, I don’t really suffer from it.” (Participant 4)

“I must say that what affects me the most is… the taste changes that occur in the mouth. Taste and dryness and these kinds of things. It’s what I think I’ve been mostly affected by. Even if it’s getting better.” (Participant 10)

Oral hygienic and motor problems

Participants mostly described burdensome sialorrhea during the initial period after oncologic treatment. Some participants had problems with phlegm production during convalescence, while others complained of a specific spot in their mouth where different foods got stuck. For one participant, another lingering issue was the loss of sensation in the corner of their mouth, which caused difficulties in knowing when they salivated visibly, or when foods became stuck onto their skin. The feeling of tongue fatigue or tongue swelling was also mentioned, as well as the tendency to accidentally bite one’s lip due to decreased sensation.

“I keep having to clear my throat all the time… Some days I spit all day”. (Participant 2)

“Sometimes my wife has to let me know, since I can’t feel anything on this side… So food can sit there without me noticing and then she’ll tell me.” (Participant 8)

Pain experience

Regardless of the range of maximal interincisal opening, cancer type or stage, or treatment modality, pain related to trismus was not a major issue for the participants. For example, one participant did not experience pain after the tumor was gone. The pain described was mostly intermittent, short-lasting, or associated with chewing or yawning.

“Yes, a little bit of a headache up here where the jaw attaches by the ear. It can hurt here sometimes. At times when I eat, it’s like a knife stab there. But it’s not a constant pain, it’s temporary and goes away after half a minute.” (Participant 8)

“I used to think it was pleasant to yawn. But now I don’t find it pleasant because there is a resistance and it’s slightly painful… It’s not really painful but rather uncomfortable.” (Participant 9)

Bodily symptoms not related to trismus, eating or pain

Limited physical fitness, muscle weakness and fatigue were mentioned as residual symptoms by some participants, as well as mild changes in voice quality. One participant complained of lymphoedema of the anterior neck. A few participants felt like they were almost back to the same physical fitness that they were in before the disease.

“I’ve been outside walking a lot during the whole time, just to keep the body moving. So, I haven’t lost a lot of my fitness. I lost five kilograms, and I needed it so to say” (Participant 4)

Category 2.

Effects on life was created from the subcategories of Impact of the disease on practical life and Impact of the disease on emotional life.

Impact of the disease on practical life

The impact of the disease and treatment on life varied considerably across the interviewed participants’ reports. For some participants, impacts were limited to their eating difficulties, which turned mealtime with friends or family into a negative experience, mainly because the mealtime was now considerably longer. For others, however, it was not a problem. Some participants mentioned that their situation was constantly improving. One participant felt largely limited because of an open intraoral wound, which caused salivary leakage. One participant did not go back to the office during the period he had a nasogastric tube. Another participant was particularly impacted by the length of period after treatment during which complications continued to arise, which led them to cancel a planned trip.

“I have considered this year to be a lost year for me. I haven’t done anything, you know.” (Participant 2)

“I can’t eat whatever I would like since I can’t chew. And as I said, it burns… some things burn like fire inside the mouth but it’s… It’s nothing that stops me from joining others to eat.” (Participant 3)

“It inhibits me from going out and eating at restaurants and spending time with friends. Because it takes me so long. So that’s what I feel is difficult.” (Participant 5)

“At least on the weekend I usually cook for my family which is fun, even if I can’t sense taste really well, I still manage to succeed mostly.” (Participant 1)

Impact of the disease on emotional life

In this subcategory, the study participants presented a variety of ways they had been affected emotionally by HNC and its treatment. Some experienced unaltered psychosocial conditions. Others wished to avoid new contacts while still wanting to be social. Some participants reported a lack of desire for physical intimacy. Many participants described emotional support provided by family, friends, or neighbors. Fear of recurrence of their cancer was mentioned by a few participants. Some also mentioned that the disease reminded them that life is delicate, and they now appreciated the little things in life more.

” I’m grateful and positive to life and enjoy every morning when I can put my feet on the floor” (Participant 6)

“I feel very fragile so to say. It’s easier for me to both laugh and to cry now. I become very emotional for others if anything happens.” (Participant 8)

Category 3.

Support from the healthcare system was created from the subcategories of Patients´ requests concerning support and information and Patients’ healthcare experiences.

Patients’ requests concerning support and information

Participants mostly expressed being well-informed about the disease, its treatment, and possible complications that may occur. One participant wished for a brochure with a timeline of when to expect specific side effects or complications after the treatment and the length of time until resolution. Another expressed that knowing more about everything that may occur would not necessarily be helpful. Others wanted to have information about support groups of HNC survivors early on, from the start of radiation therapy. One participant asked for an outpatient clinic that addressed altered taste function after oncological treatment. Other wishes were to be offered counseling and facilitation when ordering subsidized vehicular transports to and from the hospital.

“I don’t think it would have helped. It’s so difficult to imagine how things will turn out. Even if they had said that you will probably not be able to open your mouth more than 2,5 centimeters in a year, I don’t think I would have understood it properly.” (Participant 8)

“It was the cancer… It was a serious disease so to say. So that’s what I concentrated on. Mouth opening difficulties, that’s secondary, so I didn’t think about it a lot. But the information I received was good.” (Participant 3)

Patients’ healthcare experiences

In general, participants were content with the healthcare they had received, and many felt looked after by their healthcare providers. A few participants expressed disappointment with how long it took for their primary care practitioner to raise suspicion of HNC and to receive a subsequent referral to an otorhinolaryngologist. Others were disappointed with not receiving their follow-up visits and radiology appointments in time. The contact nurse function at the responsible ENT clinics was appreciated, as well as counseling before and after treatments, and dietitian and dental follow-ups. One participant mentioned that their contact nurse had called them regularly to ask how they were doing. Another expressed that the contact nurse helped them get in touch with other healthcare providers when they needed it. One participant was especially thankful for the treatment and availability of the radiation oncology unit at the University Hospital.

“And the personnel from Radiation Oncology were amazing. I was always in the same radiation room, so I got to know them. They were so pleasant and encouraging.” (Participant 10)

Category 4.

Strategies to handle life and symptoms was created from the subcategories of Psychological coping strategies and Practical coping strategies.

Psychological coping strategies

Participants reported various psychological coping mechanisms. A few mentioned having a positive attitude that was thought to favor perseverance and which helped them cope with the fear of cancer recurrence. Other psychological coping mechanisms were acceptance of their situation, in general, and adapting to life and living with trismus. Participants also mentioned that the bodily symptoms remaining from the cancer and its treatment felt less important as long as the cancer itself was cured.

“I don’t think about having had cancer so much, I mean it existed and now it seems fine so I’m going to have to think that it will continue that way for a while.” (Participant 3)

Practical coping strategies

Participants reported a variety of practical strategies to help cope with the experience of receiving a cancer diagnosis and going through treatment, as well as specific strategies to cope with the remaining symptoms. For example, participants described reading books helped them significantly during nights when they could not sleep while receiving oncological treatment, as well as in the survivorship period to help clear their minds. They also reported that the sense of meaning and purpose they felt while working was a source of solace for them. Spending time with grandchildren was a recurring coping strategy. A few participants received help with coping strategies through conversational therapy with a hospital counselor. Other strategies mentioned were medical yoga with a focus on breathing techniques and having a measuring tape that they cut off a piece from every time they went through a radiotherapy session. Watching the tape shrink in size was a helpful reminder that the goal of treatment completion was approaching.

“I tried to go back to work as early as possible, but it was during the pandemic, so I could work from home. I felt that it was good for me because it helped to remove focus away from my disease.” (Participant 5)

Several practical strategies were reported regarding eating problems. For instance, participants described that eating everything, even though it was difficult or didn’t taste normal, helped them cope with their situation. One participant reported eating the same foods as his/her spouse but finely cutting everything into small pieces instead of omitting foods that were difficult to eat. Sparkling water was helpful to some participants with swallowing difficulties as was substituting beef with vegetarian meat-like alternatives. The need to use liquids to facilitate meals was also reported.

“It’s difficult to swallow and I have to use a lot of liquids for meals and push foods in between my teeth. But it works.” (Participant 2)

One participant demonstrated a technique to increase their salivary production to help with xerostomia where they made repetitive movements with their lower jaw from side to side. Another participant used paracetamol regularly to help alleviate trismus.

“I sense a swelling which inhibits me. It worsens my mouth opening ability, so I take paracetamol for it to alleviate a bit.” (Participant 5)

Furthermore, participants explored several jaw exercise strategies. Three participants avoided jaw trainers completely and only used their fingers. This was either due to the jaw trainer causing pain or due to it feeling too bulky to use. One participant reported performing fewer jaw exercises due to an improvement in trismus-related symptoms over time and another stopped exercising after reaching a certain level of maximal interincisal opening.

“I trained multiple times daily during a few weeks or months, I don’t recall exactly, and then more sporadically. You forget about it when you have less problems with mouth opening. That’s just how it is.” (Participant 3)