Barriers and Supports for Uptake of Human Papillomavirus Vaccination in Indigenous People Globally: A Systematic Review

"[I]t is critical to center Indigenous voices to understand the context in which HPV vaccine barriers exist and to develop and implement supportive programs."

The prevalence of human papillomavirus (HPV) infection is significantly higher among Indigenous people than non-Indigenous people. Enhancing HPV vaccination is an opportunity to reduce cancer risk among Indigenous people. This review sought to systematically identify barriers to and supports for HPV vaccination in Indigenous people worldwide, with a particular focus on vaccine-eligible youth (under 18 years of age), as identified in the literature. A secondary aim was to amplify the barriers and supports to HPV vaccination as reported by global Indigenous people themselves, recognising that those most directly affected are often most contextually informed on the social and structural determinants of their own circumstances.

The overarching research project in which this review is situated is exploring the reasons behind disparities in HPV vaccine uptake in First Nations people in Alberta. Working in collaboration with First Nations representatives of a number of First Nations cancer prevention initiatives, the project's researchers cultivated an empowered partnership approach that situated First Nations people, with both experiential and traditional knowledge systems, at the centre of the work to create a foundation for research engagement, implementation, and evaluation.

A health sciences librarian searched the literature in 11 electronic databases, from inception to June 2017, with updates in December 2019 and May 2021. Forty-three studies (36 original peer-reviewed articles and 7 grey literature sources) met inclusion criteria. In the analysis and discussion of these studies, the researchers emphasised the barriers and supports reported by Indigenous people and identified studies that included evidence of community-based approaches, collaborative engagement in pilot studies, or explicit consultation with members of a relevant Indigenous community. However, only 14% of studies reported explicit or formal consultation with, or involvement of, Indigenous groups in any stage of the study process.

The paper reports on 10 barrier themes and 7 support themes to vaccine uptake (see Table 2 in the document).

Barriers to HPV vaccination:

• Beliefs: Beliefs about sexual behaviour were the most commonly reported barrier among those who identified as Indigenous - namely, the perception that the vaccine might encourage sexual behaviour among young people. These beliefs were particularly evident when concepts of cultural taboo were brought forth. The age appropriateness of the vaccine was also common area of inquiry in surveys about the barriers and supports to HPV vaccination among Indigenous people. There is some evidence that vaccine-eligible Indigenous young adults viewed their risk of contracting an oncogenic strain of HPV as low, which further reduced their vaccine acceptance.
• Multigenerational and social influences - For example, parents and grandparents might be reluctant to support their daughters/granddaughters in receiving the HPV vaccination due to the sexual connotations attached to the immunisation. Some community members reported there had been insufficient information provided through the media to remote communities, leaving Indigenous health workers feeling insufficiently trained to educate community members about the risks and benefits of the vaccine.
• Concerns about vaccine safety and side effects - Concerns about alleged side effects unique to Indigenous bodies were raised by community members in various studies. Some Indigenous people in the literature were uneasy about the possibility of infertility or sterilisation.
• Distrust - Deep distrust of the institutions providing the HPV vaccine can be a barrier to uptake in Indigenous populations. Many communities engage in sharing stories and disseminating oral knowledge, including powerful stories of lived experiences of injurious or disabling interactions with the healthcare system.
• Lack of effective knowledge dissemination - Across the majority of studies reflecting Indigenous voices, there were low knowledge levels regarding both the HPV vaccine and the disease outcomes from HPV infection. Insufficient knowledge of the HPV vaccine was also an issue for the healthcare providers serving Indigenous communities.
• Lack of culturally appropriate awareness campaigns - One study noted that Indigenous children from families with low awareness of the HPV vaccine are more likely to be overlooked in vaccination programmes, especially when HPV and cervical cancer are not talked about within communities.
• Gender- and age-specific disparities in health education delivery - The need to sufficiently inform men was identified as important, especially for sole parents and caregivers who are responsible for providing immunisation consent. One element of a culturally disparate approach to HPV vaccine education in communities was the exclusion of Elders from the health education process and the perceived lost opportunity to foster intergenerational openness.
• Lack of healthcare provider recommendation - Staff turnover, lack of provider time, and recommendation inconsistencies among providers were noted as contributing to a lack of trust and confusion that Indigenous patients might feel when faced with the decision to consent to HPV vaccination.
• Colonial systems and processes - In some studies, there were reports of minimal efforts to ensure consent was fully informed and freely given before vaccinations were administered. In key informant interviews in New Zealand, a Maori health expert highlighted the importance of ensuring that existing colonial systems continue to support equitable HPV vaccine uptake for the Maori people.
• Social determinants of health service access - For instance, Indigenous people in rural or remote communities face barriers in terms of physical access to clinics and transportation issues.

Supports for HPV vaccination:

• Beliefs - Communicating the importance of receiving the HPV vaccine through the lens of "cancer prevention" might facilitate HPV vaccine uptake.
• Affirmative multigenerational and social influences - Parents and caregivers have a role to play in communicating the importance of the HPV vaccine, and the social influence of peer support can mitigate vaccine-related anxiety and encourage vaccine normalisation and ownership.
• Increased HPV knowledge - Greater knowledge of HPV or the HPV vaccine was found in multiple studies to increase parents' and caregivers' willingness to consent to HPV vaccination.
• Community-oriented health education delivery - Encouraging community-level discussion of the HPV vaccine and its protective effects was viewed as a viable method to support vaccination uptake in many Indigenous communities. Sharing information across communities through educational support sessions was considered helpful in normalising the HPV vaccine, taking ownership of health, and encouraging vaccine-recipient autonomy, regardless of age.
• Consistent healthcare provider recommendation - Healthcare providers making a strong recommendation for HPV vaccination is seen to support Indigenous people in receiving the vaccine.
• Equity-oriented systems and processes - Both public health leaders and healthcare providers have proposed communication strategies that address local issues affecting HPV vaccination, including education that increases both provider and patient knowledge about the HPV vaccine. Collaboration with the community can mitigate many barriers.
• Social and cultural determinants of health - Physical access to the immunisation clinic (or school) supported the receipt of HPV vaccination. Initiation of the vaccine series at a younger age has also been a successful strategy to increase uptake in Indigenous populations.

The discussion turns to perspectives that are less often spotlighted in the literature:

• Indigenous parent and multigenerational caregiver perspectives - For instance, members of Indigenous communities might be wary of the vaccination process due to historical and lived experiences with medical or government systems; this legacy of racist paternalism cannot be ignored in understanding vaccine hesitancy for Indigenous people. Upon receiving adequate HPV vaccine education, many Indigenous parents were open to earlier ages of vaccine initiation and approached the vaccination process in a holistic, intentional way (involving extended family members, the vaccine-eligible child, and the wider community in a process of support).
• Indigenous healthcare worker perspectives - Although Indigenous healthcare workers reported feeling insufficiently informed to be the sole HPV vaccine educators of their community, they did seek knowledge for themselves; support from the media for vaccine messaging, especially in remote communities, might alleviate some of this pressure. Health researchers can play a key role by providing educational resources to healthcare workers to build capacity in the community and to ensure meaningful actions are taken that reflect a deep level of commitment to supporting the community.
• Indigenous community member perspectives - Enabling HPV vaccine health education for all community members was seen as a more culturally traditional way of sharing knowledge, with intergenerational health education working to normalise the HPV vaccine.
• Indigenous vaccine-eligible young adult and youth perspectives - "Only six studies investigated the perspectives of Indigenous young adults; more research on this topic is required. A lack of youth participation in the literature represents a clear and persistent obstacle to HPV vaccination strategy development....The perspectives of Indigenous youth for a service that is directed at this population are paramount given the barriers and supports identified." More broadly, the paper notes that the perspectives of Indigenous vaccine-eligible children, youth, young adults, and Elders are underrepresented in the literature, creating a knowledge gap in understanding the barriers and supports to HPV in vaccination for Indigenous communities.

Recommendations for researchers, healthcare providers, and policymakers based on the review include:

1. Prioritise collaboration with Indigenous leaders, Elders, children, and youth.
2. Ensure HPV vaccination is offered through multiple venues and various locations both within and outside of Indigenous communities.
3. Focus on vaccine relevance, normalisation, and ownership, and ensure Indigenous representation in media messaging (with a focus on oral traditions and story sharing).
4. Address misconceptions about HPV vaccines and HPV disease risk perception through community-level discussion and educational support sessions.
5. Foster intergenerational openness in community health education, with a focus on engaging Elders in knowledge gathering.
6. Engage children and youth to receive their comments on what youth need regarding HPV education and knowledge to make informed familial decisions about the vaccine.
7. Involve the men of the community; their knowledge and participation are an important component for communities when discussing sexual health promotion.
8. Be honest and maintain full transparency at each stage of the knowledge-sharing process, working at the pace of the community, and ensuring fully informed consent prior to HPV vaccination.

In conclusion: "To enhance HPV vaccination for Indigenous populations globally, culturally-appropriate, collaborative, and inclusive health education for all community members might assist governments and vaccine providers to normalize the HPV vaccine, to address misconceptions about the HPV vaccine and to ensure fully informed consent. Future work to increase HPV vaccine uptake should be supportive of community-based research in partnership with Indigenous people, to ensure the richness of shared knowledge and to reflect accurately the holistic experiences of the young HPV vaccine recipients as well as their wider community."