Table 3.

Quotes from interviews to support theme

Code	Theme	Sub-theme	Representative quote
Q1	Booklet response	Overall impressions	“I love the plain language and so far, I'm really pleased with the way you're saying things in Common English, I haven't come across really any jargon, so that's a plus” (P018 – patient)
Q2			“I understand it all, I was just more pausing from what people potentially who, you know, actually thinking about inclusion and diversity. And you're going to have different genders. You're going to have different age ranges, and you're going to have a diversity of cultures and languages, English being first or second language. I think your biggest challenge is because we are a multicultural society” (P005 – patient)
Q3		Helpfulness of the booklet	“Because family and everyone want to know, and you can just hand to them. And they can see for themselves what it is. And you don't have to explain. It would've been good” (P003 – patient).
Q4			“I think there's a lot of places that you could circulate that, through the college of GPs, through the dental schools to all the dentists and they only need a PDF…for specialists, I think they need to have that resource all sent to them as soon as you can” (P015_P – partner)
Q5	Information needs	Information seeking	“I guess I'm looking at it kind of in hindsight, I suppose, and trying to have it as clear as possible, knowing that when you read things and you're in a little bit of shock, you want to be as clear as possible” (P009 – patient)
Q6			“Because I went on to the Internet and looked up a lot of stuff… And that sort of booklet just puts it into the realm of reality rather than all the stuff you read on the Internet” (P006 – patient)
Q7			“I think my experience is a lot of people want that detail when they're going through their diagnosis and treatment plan. I just don't like uncertainty” (P007 – patient)
Q8		Knowledge gaps	“There's an awareness, obviously, of head and neck cancers and throat cancer, but the fact that it can be triggered by HPV was news to me” (P004 – patient)
Q9			“So, I have kind of had an understanding of what it is. But how I got it, whether I could pass it on, that definitely were two questions that came to mind when I was first diagnosed” (P005 – patient)
Q10			“I think you don't only get HPV from sex though. That's my understanding. I understand you can get it from kissing or yeah, it's not just sexual relations” (P011 – patient)
Q11	Emotional response	Concern for family/partner	“When I was diagnosed with it and they went through the whole treatment and then my thoughts went to protection of our children, can our children be protected?” (P001 – patient)
Q12			“Obviously, I'm going to tell my partner, but I didn’t think, my concern was not that it was going to cause him cancer. It was more the fact that he was going to get HPV” (P005 – patient)
Q13		Fear	“Does that mean I can go through all of this treatment and then it comes back? Like this generates a few questions so that uncertainty around that is a little bit scary. My concern probably wasn't whether or not HPV would lead to another cancer it's just whether or not this cancer would come back or be treatable” (P007 – patient)
Q14			“You know what the web is like, you never go ‘HPV and cancer’ and then see what's on the web. And I'm like, oh my God! Yeah, that's that kind of, I left the computer feeling pretty shaken…” (P018 – patient)
Q15			“I think this was almost the unasked, unspoken question for a couple of weeks, I've got to say [what if I pass it on?]” (P020_P – partner)
Q16		Sense of relief/comfort	“That's important to mention, just so people know there was nothing they could have done… I think that'll give people a little bit of comfort in a way if they've already been diagnosed and just again, it was probably nothing they could have done to prevent it” (P003 – patient)
Q17			“I like the word common because I feel that everyone knows that it's not from risky behaviour... That most humans, regardless of whether they're heterosexual, gay, trans, whatever it happens to be, are at risk of getting this cancer that it's not, it's not a certain group of people that are at a higher risk than others” (P020_P – partner)
Q18			“You’ve also been told you won the lottery because it responds better to treatment. I didn't know about HPV …that it responds to treatment better… Gives me hope that this responds better than anything else” (P004 – patient)
Q19		Shame and stigma	“But everyone wants to know how you got it and you know; it's got a sexual connotation to it. That's still a little bit embarrassing” (P013 – patient)
Q20			“Well, I've been with the same person since I was 18 years old. So, I'm not promiscuous. What does it matter how many partners you have? You can get it from just one person? What does it matter, risk going up with a number of partners, what, how is that helpful? Judgmental” (P011 – patient)
Q21			“Yeah, because presumably I could have been [diagnosed with HPV] p16 and [also be] a smoker and a drinker, so yeah that might be, stigmatising might be a bit strong, but yeah, I'm just not sure of that” (P022 – patient)
Q22		Unlucky attitude	“I'm just unlucky and I can deal with unlucky… Rather than something that I was to blame for” (P004 – patient)
Q23			“That's like a bit of a bummer, isn't it? That all of us reading this, we're in the one percent” (P012 – patient)
Q24			“OK, so I'm one of the very few people that turn into throat cancer. Again, it's kind of like... I guess I want the explanation for it” (P009 – patient)
Q25	Health service factors	Patient support	“Somebody our age, from a psychological point of view, having support, living on your own would be very hard. Doing it with a partner is hard enough on the partner… Having supportive friends, it’s critical, supporting partners, family (P008 – patient)
Q26			“You know, for me the one big thing I found was the support group, the reason for that was a bunch of people who all had not the same problem, but similar things or had answers that I didn't have” (P008 – patient)
Q27			“To help the next person. This why I'm doing it, not basically for myself, but for the next person” (P001 – patient)
Q28		Other medical conditions	“I'm not seeing the word herpes. And I have herpes and HPV in my head as for what HPV means so cold sores, genital herpes, that sort of thing” (P004 – patient)
Q29			“I don't know that people who are first diagnosed - it's pretty stressful - are fully aware of how to live with the side effects, because my life's been forever changed and I, you know, have various disabilities now” (P011 – patient)
Q30		Pathway delays	“So, it's just making people aware if you get a sore throat that goes on longer than a few weeks, and it's not resolved with a course of antibiotics, don't shop around, don’t go to five GP's. Demand a referral to an ENT really quickly. Just delays the diagnosis, which means your prognosis is worse and worse” (P015_P – partner)
Q31		Role of healthcare professionals	“It's good to actually emphasise that because I think some people might think, and I know my partner said actually I think once or twice, I don't really need to go to the dentist. I was like, yes you do!” (P002_P – partner)
Q32			“I think they need to emphasise the fact that the dentist can play an important part in this… I think the dentistry mob should be really inducted into the system well and truly” (P006 – patient)
Q33		Role of HPV vaccination	“I think that's great that they did the vaccine, and I hope that it really does show the numbers, reduce numbers of throat cancer because of it” (P036 – patient)
Q34			“And I think, OK, now what about the HPV vaccine? That it won't help currently, but it will help prevent further infections. So, does that mean that I can still have the vaccine?” (P009 – patient)
Q35			“And that I guess that's my question, for your partner and, but I guess that's something, you read that, and you go, so does my partner. Should she now go and get a vaccination?” (P046 – patient)