In the spring of 2007 NHS Health Scotland in partnership with Health Protection Scotland commissioned research to assess the knowledge of HPV and acceptability of HPV vaccination amongst young people, parents and education and health professionals and the health information needs of these groups if the immunisation programme were to be implemented.
In the previous few months it had become apparent that effective vaccines against Human Papilloma Virus (HPV) infection were available and an imminent decision on whether to introduce any HPV vaccine into routine immunisation schedules was expected to be made by the UK Health Departments on the advice of the Joint Committee on Vaccination and Immunisation (JCVI).
The research design involved a number of separate strands including a brief literature review, a qualitative interview study exploring the views of a sample of parents, young people and school teachers undertaken in 7 schools in a range of local authority areas of Scotland and a set of qualitative semi-structured interviews with GPs and school nurses in the health board areas that corresponded to the 7 local authorities in which schools were based.
Empirical data revealed that knowledge levels are very low in both adults and children. Most parents, young people and professionals, however, welcomed this immunisation programme as a cancer preventive, though they were also aware that there is a sexual health agenda in this that the immunisation will also address.
All parents wanted clear and honest information about the safety of the drug. This included information about drug trials, possible side effects etc. Whilst needing honesty, some parents are dismayed by the tentativeness of the language used around the possible need for booster injections for example. Young people had fewer concerns about drug safety, but had greater interest and need for information on pragmatic issues about catching the virus and its manifestations. They also needed clear information about where the injection would be administered, with some assuming that the treatment would be applied to the lower body or the cervix itself.
Young people and parents expressed a desire for information to be supplied in a variety of formats, with use of TV programmes and young people’s media (e.g. magazines) being clear favourites, and with young people expressing a stronger desire for internet sites or interactive fora in which questions could be raised and answered.
Some parents expressed a desire for an individualised service that they could opt into when they felt their child was ‘ready’. Adults (teachers and parents) were much more likely to interpret the uptake of the vaccine as sending out some kind of coded message. Either it could be interpreted as saying something about their daughter’s current sexual activity or it could be seen as parental condoning of precocious sex. Young people were much more practical, most seeing immunisation as a sensible precaution.
Parents generally saw schools as an appropriate place to deliver the programme, both for pragmatic reasons and also because they probably over estimate the amount of preparation which schools will give to children on this issue. Young people had more mixed feelings about school-based service, with reservations being expressed about hygiene in schools, the potential for hysteria and ‘wind ups’ related to a widespread fear of needles, and issues around confidentiality.
The three dose vaccination did not appear to pose problems for children or adults beyond the expressed fear of needles by many. Whilst most advocated that boys should be immunised too (on grounds that not to do so undermined SRE teaching about shared responsibility for sexual matters) there did not seem to be a strong groundswell on this issue.
Parents are convinced (wrongly, in a legal sense) that they have the final right to determine whether their children are immunised at this age. Young people’s strong views that they should themselves be involved in the choice about what happened to their body was always tempered with a degree of pessimism / realism that this probably wouldn’t be allowed.
Schools were happy to ‘host’ the immunisation programme and provide a modicum of curricular support through SRE classes. However, the current timing of SRE delivery, particularly around STIs is unlikely to be very helpful to the vaccination programme. Teachers were infinitely less willing to support the programme through methods which went beyond fairly safe didactic methods, given that they felt their knowledge levels were not secure enough. They were absolutely clear that they could not be seen to be advocating for the immunisation programme. The impact of level of teachers’ training in SRE was evident in their responses. Denominational schools face particular issues around this issue of support or advocacy of the immunisation programme.
Doctors and school nurses who were interviewed proclaimed themselves knowledgeable about HPV, the vaccine and the diseases against which it protects, though both groups indicated a need for a handy guide containing statistical information and answers to FAQs which would inevitably arise amongst concerned parents. Issues that they anticipated being questioned about included the extent of testing of the vaccine, the length of protection it confers, the possibility of side effects, the interaction with other vaccines being given at this age and why it had to be given in three injections. Health professionals also foresaw having to answer a range of questions related to HPV implementation policy. School nurses needed clear and unequivocal guidance about issues of consent.
Health professionals felt they would be supported by continuing attempts to manage the media so that cancer prevention aspects are emphasised. Those in rural areas felt they would need particular support to convince parents that their 12/13 year olds were on the cusp of their sexual career. Both school nurses and GPs noted that their services would need extra resource to manage the programme.
The report concludes by recommending that in addition to any information publication NHS HS and HPS are likely to produce, they should also aim to meet the information needs of parents and children through the addition of further supportive material being offered in a supplementary fashion through websites, online Q and A fora or through young people’s media. Any public information campaign should emphasise that waiting for ‘readiness’ in children is a dangerous strategy and may effectively negate the benefit of the vaccine.
The report also recommends that a handy information pack for health professionals should be part of the preparation, with answers to questions about the safety and efficacy of the vaccine, as well as ‘scripted’ responses to queries about the policy decisions that lie behind the implementation programme.