Eighteen participants were recruited, which took data collection to saturation. This comprised four women and 14 men aged from 37 to 75 years. Of the 60 patients that were invited to participate, two had died, one declined due to mental health status and three more as they did not feel well enough, eight cancelled their recall appointment and the remaining 28 failed to attend for review.
Overall 16 participants communicated verbally, and two participants communicated non-verbally with pen and paper. Interview length ranged from five minutes 10 seconds to 42 minutes and five seconds. All interviews were conducted by the same researcher.
A summary of the thematic analysis is found in Table 2, key findings are discussed thereafter. Each quote is followed by participant demographic information relating to gender, summarised as M (male) or F (female) followed by their age in years.
It was apparent that the experiences, expectations and understanding of pre-RT dental extractions were similar across all demographics.
The period immediately after receiving the diagnosis was a frightening time for many of the participants. It is within this stressful context that they came into contact with the dental team.
'...all hell let loose, letters, bombardments and obviously the diagnosis, which was obviously a big shock to the system...' (Interview 13, M:54. Lines 31–32)
A wide range of factors influenced their experience; however, the provision of information in relation to dental assessment and treatment was a recurrent focus within the interviews. The majority of participants did not feel adequately prepared for the likelihood of pre-RT extractions. This was frequently due to a lack of information or misinformation from the oncology team:
'I thought I was coming up for something like a check-up and to see how things were, but they were more or less saying we're taking seven out this evening like you know. I was a bit shocked about that...' Interview 17, M:59. Lines 111–114
Many felt that due to the pressure of starting cancer treatment, they did not have the capacity to receive and process any more information:
'...everything happened too quickly, I didn't really have time to think about it, which I know they were doing it for the good, so I don't get complications after, yeah but erm yeah, it all took it... (pause) it's all sank in now [sic] I've had time to heal but at that time I found everything really overwhelming, the visits up here, seeing so many different people, and the fact that I was going to lose five teeth.' (Interview 3, F:38. Lines 77–80)
It was also suggested that individual needs differed and their emotional status clearly affected the retention and understanding of information provided:
'I'd imagine that everybody reacts differently. I thinks [sic] that's personal, everybody's response is different... I don't think that was anything lacking on your part, I think it was sort of my mental frame of mind really, quite scared, it was quite a frightening time...' Interview 16, F:53. Lines 193–194, 198–199)
The majority of participants expressed apprehension and shock at extraction recommendations, particularly those who had no prior oral disease:
'I think it was such a shock to me because all I was told before I started radiotherapy was that I had to go have my teeth x-rayed to see (emphasis) if there was any decay because if there was, then they were going to remove the teeth beforehand, not the fact that there is absolutely nothing wrong with your teeth but we're going to take them out anyway. That came as a shock.' (Interview 1, F:44. Lines 101–108)
A small number of participants expressed no worries about the extractions in view of their overarching concerns for their general health at that point in time:
'Didn't bother me. As long as the cancer is alright, that's the only thing that bothered me.' (Interview 5, M:62. Lines 67–68)
Many participants were able to recall some of the clinical reasons offered for the recommendation of dental extractions, but understood that this was a precautionary recommendation:
'...they decided to extract the eight teeth at the back because they could foresee that it was going to be problematic at a later date.' (Interview 16, F: 53. Lines 49–50)
Most of the participants had some understanding that there was a risk of ORN following dental extractions post-RT, but seemed to think that this would be a definite outcome should any future dental extraction ever be required.
'Something to do with the bone. The bone is dead, so take them out or something like that.' (Interview 5, M:62. Lines 61–62)
A number of participants had faith in the advice offered by professionals and did not want to contest this:
'...I just trust in professionals to do their job properly. I'm not quizing them in their ability to look after me... they tell me what they're doing, they do it and I say fine, thank you very much.' (Interview 14, M:75. Lines 77, 80–81)
However, one participant would have valued a second opinion to assist their decision making:
'I think at that point I really wanted a second opinion but it was like we have no time, it was literally two days before the operation I think, because I mean it is a major thing, four teeth is quite a lot because now I'm only chewing on one side and it makes me concerned.' (Interview 6, M:52. Lines 114–121)
Although this was not highlighted by other participants, this may indicate that they were unaware of the option of having a second opinion or involvement of their own dentist.
A large number of participants felt that they had no choice in whether or not to go ahead with the recommended treatment:
'There was no decision to make like. I, I didn't make that decision... the dentist made the decision, and said that seven had to come out for it to be successful for later on, but I don't think I was given that option of leaving them in.' (Interview 17, M:59. Lines 128–131)
Many felt that this lack of choice was due to the higher priority of cancer treatment:
'I had no choice. You know, it's either that or the cancer.' (Interview 4, M:62. Line 74)
In addition, some participants admitted being passive in the decision making process as they felt overwhelmed:
'...at that point I didn't really want to argue because I had too much stuff, so I said OK do it, do whatever.' (Interview 6, M:52. Lines 93–94)
For the majority, it appeared that an 'all or nothing' approach had been taken. However, two participants negotiated to reduce the number of teeth that were planned for extraction:
'They did want eight, and (laughs)... [the dentists] at the time said you know we think you'll be alright with just us taking four.' (Interview 1, F:44. Lines 82–83)
Having explored the decision-making process through which participants underwent extractions, the consequences of the extractions themselves were explored. Overall the dental extractions had a profound negative impact, with many expressing a sense of grief:
'Out of everything so far, of all the treatment, chemo and radiotherapy, it's not having those teeth there that really pisses me off the most. Unbelievable you know.' (Interview 7, M:55 lines 93–95)
'...it was the eight at the back... which I still have in a box (laughs) ..., I think I definitely had a little sense of loss (laughs) which is why I kept them.' (Interview 16, F:53. Lines 95, 113).
Many participants had concerns about their appearance after the teeth had been extracted:
'I do worry because I am aware that teeth give you your facial features and they sort of hold everything together, and I worry that as I get older, is it going to affect how I look because I like to look nice... you notice when people haven't got teeth their face sinks in somehow ... I don't want to look old and saggy and you know...' (Interview 13, M:54. Lines 137–143, 145–148)
'...I thought am I going to have to be careful how I smile here, or is it going to look particularly ugly because I had a bit of a lop-sided grin...' (Interview 9, M:64. Lines 207–209)
In addition, a wide range of functional issues were raised. Most participants felt that they had difficulties eating to some extent:
'... it's affected my eating tremendously. You know, everything has to be mushy and slushy, like Weetabix and things like that. I can't chew meat. I can't even chew a biscuit. Nothing.' (Interview 2, M:52. Lines 75–77)
'I felt like I must look like a rabbit because I was having to chew just on my front teeth and was quite self-conscious.' (Interview 9, M:64. Lines 200–205).
Some reported concerns in relation to changes in speech due to missing teeth:
'...sometimes with no teeth it makes you dribble a little bit, it affects how you talk.... It sort of, because of that gap there, you've got a lot more phlegm and you have to sort of watch how you speak. So it affects your pronunciation.' (Interview 7, M:55. Lines 116–119)
Some participants reported general discomfort due to altered soft tissue control in the edentulous spaces:
'...I also feel that the face has caved in and you end up sometimes like sucking your cheek and biting your tongue.' (Interview 7, M:55. Lines 191–193)
For many, the dental extractions left them feeling incapacitated:
'...if only I could have hung onto my teeth, I was totally really devastated that they had to come out, you know. Absolutely. Absolutely, drained you know.' (Interview 10, M:68. Lines 127–129)
'...the overall scenario of having all of those teeth out, I feel like my mouth's disabled.' (Interview 13, M:54. Lines 195–196)
A number of participants expressed regret:
'I may have said I'd like to keep a couple even if they're a bit rotten, or do something, fill them the best you can. I don't know but if it comes to it, take them out if they do go really bad after radiotherapy. But sort of being given the choice a bit more really I think.' (Interview 2, M:52. Lines 130–133, 140–141)
'I think I would sooner have had the cancer and finish my days eating properly because I cannot eat properly now, I have to eat mush and all sorts of soft stuff, you know, I long to eat a decent meal again...' (Interview 10, M:68. Lines 68–70)
Participants were divided in their perceived need for tooth replacement post-RT. Some had accepted the ensuing changes in view of the greater need for cancer treatment:
'...you expect to be inconvenienced and things not to always be normal, but as long as we get rid of the cancer, that's the main thing' (Interview 1, F:44. Lines 118–120)
Others felt that they had not received information explaining that extracted teeth may never be replaced and remained uncertain about their future prosthodontic options:
'I didnt realise at that point that I would never be able to put anything instead of them. In fact I always thought that I would be able to replace them when I have money and as far as I understand now, I won't be able to do it. So yeah, if I knew this then, it would have been a major issue.' (Interview 6, M:52. Lines 105–108)
'...if I could have a couple of teeth over this side and this side, I could chew on something but I've not been told and the lady in there just said that I'd have to be referred to somewhere else for specialist treatment for that, but wasn't really told any of this beforehand. So it's a bit of a shock, you know.' (Interview 2, M:52. Lines 106–111)
Participants described different preferences for information provision and more time to enable them to assimilate their thoughts:
'...having some dedicated literature even if you know it's not a brochure it's something printed out, and for me personally I'd prefer to have several days to read it and re-read it, maybe do some research online basically for questions, to make sure I have enough questions for the consultant' (Interview 6, M:52. Lines 206–209)
'Verbally for me anyhow, I like the personal touch really rather than more and more information...' (Interview 17, M:59. Lines 175–176)
The final theme that was explored was oral health status. Participants were asked about their perceptions of oral health before and after their cancer treatment. Many felt that they had adequate oral health by attributing this simply to a lack of symptoms yet reported limited awareness of oral care routines:
'It was alright, no problems. Just brush it, once or twice.' (Interview 5, M:62. Lines 31, 38)
Among this sub-group, poor dental attendance was a frequent finding:
'Not at all if no toothache' (Interview 18, M:60. Line 48)
Dental anxiety was cited as a reason for irregular attendance:
'I hated it because I am terrified of dentists. Face me with someone with a gun or a knife and I'll know what to do, but dentists...' (Interview 9, M:64. Lines 77–78)
Overall, 15 participants reported improved awareness of positive oral health-related behaviours post-RT:
'Well brushing my teeth is the major thing I guess. I do need to sign up with a dentist, as I said I've never had one, so yeah that's on my to-do list. One more thing I guess is that I have significantly reduced my sugar intake, so I try to only do fruits and nuts rather than chocolates.' (Interview 6, M:52. Lines 63–66)
The majority described oral care routines as expected in line with professional guidance for HNCPs. One participant was less motivated towards oral healthcare:
'Erm, I tend to be lazy now. Yeah, because of the radiotherapy it's easier for me to say I'll do it later than it is for me to get up and do it.' (Interview 8, M:62. Lines 54–55)
This is not surprising as several participants acknowledged that oral hygiene was more difficult post-RT:
'...it's certainly more difficult, it's more of a challenge, I don't have the extension of erm you know, my jaw isn't opening, so it's much harder to clean...' (Interview 16, F53. Lines 75–76)
