Background
Methods
Recruitment and consent to participate
Results
Extent of young people’s autonomy
Schools-based vaccination sessions
‘I bet a lot of children don’t even turn up [to school], if they know it’s [the vaccination session] happening on Friday’ [Mother 1, community group 2]
‘You’re always going to have a very small number, thankfully, that will stay off school on that day to avoid having the injection regardless of what you do to promote the importance of it and the benefits of it.’ [School staff 1, school 2]
Exercising autonomy during the consent procedures
‘Even though it’s prioritising parental consent, you’re putting that responsibility on the child to get that important literature home and get it processed and get it back into school but they’re not actually responsible for it. It’s kind of quite strange.’ [Mother 6, community group 6]
‘I think that’s why my daughter wasn’t like ‘mum can you sign this?’ [HPV vaccine consent form], you know, ‘cos she didn’t want it.’ [Mother 9, community group 1]
‘They think if they hide the form, they don’t need to have it [the vaccine] and it’s amazing how many forms miraculously appear out of the bags when you say that you’re going to phone the parents.’ [Immunisation nurse 3]
‘Sometimes they don’t want to get it [the HPV vaccine] done so they forge the form.’ [Young woman 1, parent verbal consent, mainstream school 10]
‘If they’re scared the needle’s going to be really big they just won’t give it [the consent form] to their parents.’ [Daughter 2, parent written consent, community group 5]
‘If she [her daughter] knows it’s for an injection, she’ll probably throw it in the bin or something ‘cos that’s what she’s like. I mean that’s what most girls are like isn’t it? If they don’t want to have- well who wants to have an injection?’ [Mother 4, community group 1]
‘I think people [school staff] should get- like, if they wanted to give us the consent form, they should send home a text or ring my mum.’ [Young woman 3, parent verbal consent, mainstream school 9]
‘I always want to give my mum the letters but I have a bad habit of putting things in my bag and then forgetting about it.’ [Young woman 5, parent verbal consent, mainstream school 9]
‘I know I had it in school but I came in the morning and I lost it ‘cos I was going to hand it in to reception but I sat down in this area and I lost it.’ [Young woman 1, parent verbal consent, mainstream school 10]
‘It’s often though, the case that students who come from a more kind of disorganised background are the ones that don’t bring their forms back in. I know it’s an obvious thing to say but those that are out of routine, those are the ones where forms stay in bags or get left on the kitchen table or accidentally picked up, put in the bin and you won’t get them returned and those are the ones you’re chasing a lot.’ [School staff 1, mainstream school 2]
‘We got given like a big sheet and my mum didn’t want me to get that [the HPV vaccine] or the meningitis I think, so I signed them myself and got it done anyway.’ [Young woman 1, written consent, community group 4]
‘So one in particular the young girl had come in, spoken to my colleague, gone down ringing mum, no reply, does mum want you to have the vaccine? Yes, yes, she wants me to, we just haven’t bought the form back ... Great girl, went through everything, really competent, signed her consent, someone else, another member of staff went on and gave the vaccine ... By the time we got back to the office she’d obviously rung mum then and mum had rung in absolutely fuming that she had signed, I believe she had signed as a refuser and the form hadn’t made its way to us.’ [Immunisation nurse 2]
‘My mum kept forgetting. I kept reminding her but she kept forgetting to give it [the consent form] back to me.” [Young woman, adolescent self-consent, mainstream school 1]
Communication channels about the HPV vaccination programme
Information provision for young women
‘It wasn’t targeted at us I don’t think. They [the school] just kind of gave us the letter and like oh you’re getting it in a few weeks.’ [Young woman 4, parent written consent, community group 6]
‘I’m pretty sure most people probably didn’t read the leaflet, they probably just gave it to their parents.’ [Young woman 2, parent written consent, community group 4]
‘You need to guide them through it a bit more rather than just sending information and expecting them to read it and act on it. I think they probably wouldn’t at a young age.’ [Mother 1, community group 5]
‘I had to give her [mother] the consent form to sign the consent form for my vaccine and then we just talked about what the vaccine was for and then why boys don’t get it.’ [Young woman 3, parent written consent, community group 6]
‘My mum didn’t really tell me anything about it [the HPV vaccine]. Just the person [immunisation nurse] spoke to her on the phone what it was about and then just said it’s fine.’ [Young woman 3, parental verbal consent, school 9]
‘Some ethnicities and cultures are, how shall I say it, slightly more hesitant shall we say about having injections and the reasons for it and the discussion of illness and disease and other more what might be considered sensitive matters like sex education for example, is either considered a taboo or can just be a really awkward matter that just isn’t discussed at home.’ [School staff 1, mainstream school 2]
‘It’s quite a tricky age to have those sorts of conversations [about sexual transmissibility of HPV], isn’t it? I guess it’s probably why it’s better if it’s just done- if it’s just rolled out, they just don’t really have a choice. I guess they do have to have a choice don’t they? That’s the problem.’ [Mother 7, community group 1]
‘It was like kind of unexpected, like we didn’t have assembly or we weren’t really told by any teachers, we were just told oh you’re getting a vaccine done and that was it and then it was like oh if you have any questions there will be a paper which will be given out which will tell you all the information you need. And then the day came and then we didn’t really like have anyone to question.’ [Young woman 5, parent verbal consent, school 9]
‘That’s communication failure then because we’ve missed that … Ours [vaccine eligible students] have not had the letters so that’s worth- Yeah, I’ll chase it up.’ [School staff 1, alternative education setting 4]
Young women’s communication preferences about the HPV vaccine
‘I think maybe probably like an assembly, or just like talking to the children about it I think would be better.’ [Young woman 3, parent written consent, community group 6]
‘I would think more a healthcare professional because people wouldn’t want to listen to teachers to be completely honest. When the teacher starts talking at you, it’s when people generally switch off, but at least if it’s someone external they try to listen.’ [Young woman 1, parent written consent, community group 4]
‘When no one tells you, the girls just start, well the girls at my school just started making stuff up. Oh, the needles are really long and you’re going to die and stupid stuff like that and that got some of girls really scared so it’s good to give them at least some information so they know the basics.’ [Young woman 1, parent written consent, community group 5]
‘I think if you have sessions within schools then that’s a lot more structured, you have to focus, you have to learn … so that’s something that has to happen, but if it’s a leaflet that can get lost or screwed up, that’s got so much potential to not get anywhere and then you get to the day and the kids like yeah I want the vaccine, you’re like great, your parents haven’t done this, you don’t know what it’s for, like what are we meant to do?’ [Young woman 2, parent written consent, community group 6]
Information provision for parents
‘We got a leaflet just saying this was the vaccine that she was going to have, very kind of basic information about what HPV is, I think. Other than that, yeah, that was it, just for me to consent and of course we did.’ [Mother 1, community group 3]
‘If they could just put the information out in clearer form everybody would be able to understand it.’ [Mother 1, community group 1]
‘I just remember when she [her daughter] came in with that form [for the HPV vaccine] from the school nurse, it was in a specialist setting … you just call the school nurse … and ask all the questions and she just reassured me about all of it so I knew it was ok to do it. All I can remember is that it was about cervical cancer, I can’t remember what all the rest was about.’ [Mother 2, community group 2]
‘I would say do a talk on it but then you might not get many parents turn up’. [Mother 9, community group 1]
‘Then you google and then you see the scare story, and then you don’t want to have it [the HPV vaccine] done.’ [Mother 3, community group 2]
‘When you search something on the internet obviously there needs to be some way that the parent can distinguish between the two because there’s always going to be one for and one against and they’re both going to be telling it from their point of view, and yes they’re both possibly correct. But they’re both probably wrong to a certain- in some way.’ [Father 1, community group 1]
‘If they’re [parents] reading information that isn’t right, it’s coming from an anti-vacc- It does read quite legitimately but we know as practitioners that what it’s saying is incorrect information. As a layperson you wouldn’t necessarily know that so as long as we’re putting out the right information as well so they can make that informed decision that is their right to do that.’ [Health manager, immunisation team]
‘If there are parents who have their own learning needs, we would probably need to be talking to them, not just sending the note home.’ [School staff 1, alternative education setting 1]
‘There’s still a few parents here who can’t read so hopefully the students would explain to them.’ [School staff 1, mainstream school 1]