Discussion
Key Findings
The studies included in this review illustrate how a young woman's access to the HPV vaccine is shaped by decisions at different levels of the socio-ecological model. This includes: the policy context; social norms and values, particularly in relation to sexual activity; the views and actions of healthcare professionals, and; parental consent. There is far less qualitative evidence of the role of young women in this important decision affecting their future sexual, physical and reproductive health. The stages at which decisions are made before young women are able to exercise any agency over whether they receive the vaccine are illustrated in Figure 2. Healthcare professionals' decisions to recommend HPV vaccination, and the requirement for written parental consent, appear to be the most influential stages at which improvements to uptake of HPV vaccination programmes could be addressed.
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Figure 2.
Pathways of decision-making in relation to HPV vaccination of young women in high-income countries.
Policy Decisions
Some of the most important decisions affecting access to the HPV vaccine are made at policy level, and relate to whether the vaccine is incorporated into the healthcare system, the financial arrangements for accessing the vaccine, and the arrangements for its delivery to the target population. A systematic review examining predominantly quantitative data from 22 studies (21 of which were conducted in the USA), reported that when cost is a factor in vaccine access it dominates as a barrier. Similarly, the data examined for this qualitative systematic review and evidence synthesis highlight the importance of financial considerations to healthcare professionals and families where the costs of the vaccine are not met through a universal healthcare system. Studies investigating factors which affected decision-making at the policy level were underrepresented in the literature. Given the importance and cost of implementing initiatives such as HPV vaccination programmes, further research to understand factors that influence policy-level decision making should be considered.
Healthcare Recommendation
In healthcare settings, an important prompt to uptake appeared to be the decision for the healthcare professional to recommend vaccination. This has been reported in a systematic review, comprising predominantly quantitative primary studies, of barriers to HPV vaccination and a statistical analysis linking HPV vaccine uptake with survey data from the US-Teen Survey. The qualitative data also suggest the decision to recommend was influenced by concerns about safety of the HPV vaccine. However, value judgements about a young women's likely sexual activity were also influential. Universal recommendation of the HPV vaccine needs to be incorporated into routine practice to ensure access for all eligible young women. Future studies could test whether patient reminder systems and computer prompts that remind healthcare professionals to recommend HPV vaccine to vaccine eligible young women increases uptake.
Parental Consent
The barrier of requiring a healthcare professional's recommendation to receive the HPV vaccine was largely overcome in school-based programmes where the policy is to offer HPV vaccine universally to eligible young women. However, in this setting the requirement for written parental consent presented the greatest barrier to access. Healthcare professionals delivering the HPV vaccination programme could adapt implementation procedures to reach apparently 'disengaged' parents. This could be tested in existing HPV vaccination programmes by introducing strategies to introducing home visiting or chasing up consent forms if not returned.
Young Women's Autonomy
Vaccine safety, misperceptions of need based on sexual activity, and low perceptions of risk of HPV acquisition have been highlighted as barriers to positive HPV vaccine decision-making by young women. However, the findings from this study suggest that young women are predominantly passive recipients of the HPV vaccine. Parents generally appeared keen to retain their role in decision-making on behalf of their daughters, and healthcare professionals appeared to reinforce this role.
Other combinations of decision-making about HPV vaccine were also identified. Vaccination may be sought by young women when parental consent has been actively refused or when a parental consent form has not been returned. Young women may also exercise their rights to refuse vaccination when parental consent has been granted, although there was little evidence for this within the qualitative studies included in the review. To address gaps in our understanding of this important process, further qualitative research should examine young women's perceptions of, and involvement in, decision-making about the HPV vaccine. Further, healthcare professionals may require clear guidance and support in understanding how and when a young woman might be given the vaccine without parental consent.
Social Norms and Values
A secondary objective of this review was to gain understanding of the factors contributing to inequalities in uptake of the HPV vaccination programme by ethnicity previously identified. Corresponding with the findings of other studies, the importance of social norms and values, particularly sexual mores, were evident in the views of healthcare professionals, parents and young women. The qualitative evidence presented here suggests that some healthcare professionals avoided conversations with parents about the HPV vaccine if they perceived this to be culturally inappropriate. Lower likelihood of healthcare provider recommendation amongst ethnic minority parents has also been demonstrated from survey data of the United States National Immunisation Survey-Teen. Young women are at risk of not receiving full levels of protection from the HPV vaccine if parents and healthcare professionals restrict access to the HPV vaccine, regardless of her needs and preferences. Development of strategies for healthcare professionals to overcome barriers to recommend HPV vaccination universally, regardless of cultural or religious group, are required.
Mistrust of the motivations of healthcare professionals in relation to the HPV vaccine was a pertinent issue for some minority ethnic groups. In the USA, the historical legacy of the mistreatment of African Americans in the Tuskegee syphilis experiment (during which the USA Public Health Service studied the natural progression of untreated syphillis in rural African American men who thought they were receiving free health care) may contribute to levels of mistrust in contemporary populations. However, in other countries and in other populations there was also evidence of concerns about the safety of the vaccine by healthcare professionals as well as parents. Such concerns are exacerbated by negative media coverage. For example, in the UK the death of a young woman on the day she received the HPV vaccination received widespread media coverage and prompted anxiety in the wider population, despite her death being unrelated to the vaccine. Such stories reinforce anti-vaccine beliefs held by some sections of the population. Issues of trust require clear, accessible, and sometimes culturally appropriate, information about the HPV vaccination. Further, identifying community-engagement strategies to strengthen relationships between healthcare professionals and the populations they serve may be beneficial.
Strengths and Limitations
A systematic search of multiple databases was undertaken to identify all the relevant qualitative literature meeting the predetermined study criteria. Studies were not excluded on the basis of qualitative research method, or publication date, or population group. This has resulted in a comprehensive review capturing a range of perspectives resulting in a more complete picture in relation to decision-making for HPV vaccination of young women. The method of using qualitative synthesis within a socio-ecological framework enabled facilitators and barriers to be identified in relation to different stakeholders. This clearly illustrates the importance of targeting interventions at the appropriate level of decision-making, as well as identifying areas for further research.
Previously applied research methods to synthesis findings of qualitative studies were used to carry out the study. The strengths of a qualitative synthesis include the possibility to reach conclusions based across common elements identified in heterogeneous studies. The results from a synthesis may be more accessible to a wider audience than if each of the primary studies had to be located individually. Further, a synthesis can provide a weight of evidence about particular issues. For example, few primary studies identified specifically addressed factors affecting uptake in minority ethnic populations. However, when the studies were combined more data on this topic was revealed.
There are some limitations. Studies not published in English were excluded and the findings reported therefore may be subject to English language publication bias. Although study selection was not limited by study design, few primary studies incorporating observational methodology were retrieved. Further, many of the studies reported views of stakeholders in relation to a hypothetical HPV vaccine. Therefore, primary studies have reported accounts provided by participants which may not reflect actual practice.
Thematic synthesis was undertaken by one reviewer (HF) with discussions held with the second reviewer (SA) as analysis progressed. The interpretation of the primary study findings, and consequently a different thematic framework, may have emerged if an additional reviewer had undertaken analysis at this stage. The subsequent exclusion of low- and middle-income countries from the study limits applicability of the findings within these settings. Further research to understand barriers and facilitators to HPV vaccination of young women in low- and middle-income countries is recommended. Finally, theoretical frameworks were underutilised in the primary studies. Of the 41 studies included in this review, only eight reported using theoretical models in the study.