Young women’s autonomy and information needs in the schools-based HPV vaccination programme: a qualitative study

BACKGROUND: Until 2019, the English schools-based human papillomavirus (HPV) vaccination programme was offered to young women (but not young men) aged 12 to 13 years to reduce HPV-related morbidity and mortality. The aim of this study is to explore the extent to which young women were able to exercise autonomy within the HPV vaccination programme. We consider the perspectives of young women, parents and professionals and how this was influenced by the content and form of information provided. METHODS: Recruitment was facilitated through a healthcare organisation, schools and community organisations in a local authority in the south-west of England. Researcher observations of HPV vaccination sessions were carried out in three schools. Semi-structured interviews took place with 53 participants (young women, parents of adolescent children, school staff and immunisation nurses) during the 2017/18 and 2018/19 programme years. Interviews were recorded digitally and transcribed verbatim. Thematic analysis was undertaken, assisted by NVivo software. RESULTS: Young women’s active participation and independence within the HPV vaccination programme was constrained by the setting of vaccination and the primacy of parental consent procedures. The authoritarian school structure influenced the degree to which young women were able to actively participate in decisions about the HPV vaccination programme. Young women exercised some power, either to avoid or receive the vaccine, by intercepting parental consent forms and procedures. Reliance on leaflets to communicate information led to unmet information needs for young women and their families. Communication may be improved by healthcare professional advocacy, accessible formats of information, and delivery of educational sessions. CONCLUSIONS: Strategies to improve communication about the HPV vaccine may increase young people’s autonomy in consent procedures, clarify young people’s rights and responsibilities in relation to their health care services, and result in higher uptake of the HPV vaccination programme. TRIAL REGISTRATION: ISRCTN 49086105; Date of registration: 12 January 2018; Prospectively registered. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12889-020-09815-x.