Beliefs.

Beliefs about sexual behavior were the most commonly reported barrier among those who identified as Indigenous, namely the perception that the vaccine might encourage sexual behavior among young people. These beliefs were particularly evident when concepts of cultural taboo were brought forth. For instance, despite overall support for vaccination in a community in Papua New Guinea, there were concerns expressed by community members about a perceived increase in promiscuity once disease protection was acquired from the HPV vaccine; some participants believed that there might be a community-wide increase in the sex trade [32]. In settings where public health messaging focused on the sexually transmitted nature of HPV, healthcare providers suggested that explicit discussions about sex were needed; such discussions was seen as problematic by Indigenous community members where cultural taboos about discussing matters related to sex, such as sexually transmitted infections (STIs), may persist (e.g., from cultural or historical factors). One schoolteacher in an urban area of Papua New Guinea expressed that discussion of sex or sexual organs in their village was unacceptable [33]. The belief that the HPV vaccine might increase promiscuity was echoed by vaccine-eligible youth in that study. When asked how her community would respond to HPV vaccination messaging focused on STI prevention, one teenage participant said that many would be opposed because of perceived increases in prostitution after vaccination, despite no evidence of any such association [33].

The age appropriateness of the vaccine was a common area of inquiry in surveys about the barriers and supports to HPV vaccination among Indigenous people [34–38]. In one survey among Native Hawaiians, 39% of parents indicated that a reason they did not consent to vaccination of their daughter(s) against HPV was a concern about age (e.g., ‘too young to get the vaccine’) [35]. Within focus groups in the United States, community discussions surrounding the appropriate age for vaccination did not result in clear consensus on preferred vaccine timing for their youth, due in part to the complexities associated with the onset of sexual activity (e.g., general fear that vaccination might somehow excuse sexual initiation) [39]. In Australia, Indigenous community members felt the preferred age for vaccination was largely determined by the physical and emotional readiness of a vaccine-eligible child [40].

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. In a focus group study of post-secondary students in the southwest United States [41], students voiced opinions that virtually everyone contracts HPV, but not all cases of HPV would necessarily result in cancer; that the HPV vaccine provides minimal protection against all cancer-causing strains of HPV; that vaccination prevents infection from only certain strains of HPV; and that there are alternative prevention options for cervical cancer (namely Pap smears and treat the disease of identified irregularities). These personal risk perceptions played a role in decisions not to obtain the HPV vaccine. Students also discussed traditional approaches to cervical cancer prevention and treatment modalities that exist outside of western biomedical model, including belief in traditional medicines that are customary in their American Indian communities [42].

Multigenerational and social influences.

Given that the HPV vaccine is offered predominately to youth under the age of 18, parents or caregivers might refuse to consent for their children to be vaccinated in school, or might influence the autonomous decision of their adolescent to seek the vaccine for themselves [41, 43, 44]. Multigenerational caregivers (i.e. including parents and grandparents) might be reluctant to support their daughters/granddaughters in receiving the HPV vaccination, due to the sexual connotations attached to the immunization. One health worker expressed that, in the Northern Plains American Indian community, the father would not consent to vaccination due to misconceptions held about promiscuity [44]. In a different circumstance, three women in Peru reported that their husbands prohibited their daughters from receiving the HPV vaccine [45]. It can be challenging to overcome these barriers because many families are unwilling to discuss sexual behavior. An American Indian university student stated that her family did not openly discuss sexual activity, so conversation about a vaccine that protects someone from HPV would have been dismissed [41].

Negative media reports can increase social stigma and fear of side-effects, and lead to community spread of misinformation regarding the HPV vaccine [40, 44, 46]. Interview participants in Australia indicated a need for public media members to report on the vaccine ‘responsibly’, after a local news broadcast erroneously stated that the HPV vaccine was compulsory [40]. In other communities, some members reported that 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 [40].

Concerns about vaccine safety and side-effects.

During interviews with vaccine-eligible youth in Alaska [47], younger teens reported fear of pain associated with the vaccine, and older teens cited concern regarding side effects. The fear of short- or long-term side effects was reported to have negatively influenced the decision to be vaccinated against HPV. Fear of long-term side effects that might be life threatening was one area of concern, with one Arizona university student stating that something seemed “seriously wrong” with a friend who had just received the vaccine [41].

Concerns about non-specific safety issues and unwanted side effects led Alaska Native parents to delay HPV immunization for their children [48]. Many Indigenous parents in the Northeastern United States did not trust a ‘new’ vaccine, and simply preferred to wait to vaccinate their daughters until more information about the long-term effects were known [39]. Among 44 non-consenting parents in a telephone survey in Fiji, 52.3% cited concerns about HPV vaccine safety as the primary reason for withholding consent. These parents commented that the vaccine was new in their country and that they had heard negative information about the vaccine from friends and in the media [46]. Fears regarding HPV vaccine safety can be so pervasive that even health workers in Indigenous communities can be affected, and some American Indian providers reported apprehension in recommending it [44]. Mothers in Alaska expressed discomfort in consenting to a new vaccine for their children, stating that some side effects might not be known until many children are vaccinated. Another parent was afraid their child might contract the disease as a result of vaccination [48].

Concerns about alleged side-effects unique to Indigenous bodies were raised by community members in various studies. In Victoria, Australia, one parent asked whether the clinical trials had been conducted with Indigenous women, stating “Our immune systems are set for things in the land…if this has not been tested on us, and the vaccine has things that are not from the land, it could make us very sick” [40]. A vaccine-eligible young adult in the United States expressed that there is a lack of understanding about how Indigenous bodies will react to HPV vaccinations [41]. Stories from Australia of women losing their hair after vaccination echoed these concerns about Indigenous-specific side-effects or reactions [40]. Other perceived risks, such as fear of autism, were cited as reasons to be cautious in decision-making [41]. Indigenous parents in the United States perceived all these risks for their daughters to be real, and reported on the challenge of weighing the more present risks of vaccination against the small, future risk of cervical cancer for their children [39].

Some Indigenous people in the literature were uneasy about the possibility of infertility or sterilization. Community participants in Papua New Guinea feared that the HPV vaccine would result in the destruction of reproductive organs and trigger additional complications resulting in infertility [32]. Other studies echoed concerns about infertility arising from the vaccine [41, 45]. In communities where children and youth are prioritized, the potential for infertility is a serious health concern with important socio-cultural ramifications [40].

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. Social communication of experiences of perceived harm from vaccines and ill-intent of institutions can result in community-wide caution, distrust, and general apprehension towards HPV vaccination [49]. Information passed down through generations may reflect long standing suspicion of government or healthcare system intent in distributing vaccines to Indigenous people. In the United States, participants assumed that, and questioned why, a new vaccine was being ‘tried out’ among Native women first [39], and many questioned the intentions behind vaccine distribution to their communities, assuming that many factors were yet unknown. One health worker in Ontario, Canada spoke of stories of a vaccine circulating in previous years that was meant to kill off Indigenous communities [23]. General distrust in the government, pharmaceutical companies, and healthcare workers was evident. There was widespread concern that any ‘new’ vaccine might not only be unsafe but tested on Indigenous communities without their consent. One Alaska Native parent expressed alarm at her suspicion that Indigenous people could be treated as laboratory test animals, having heard stories of past Indigenous people being unknowingly or forcibly vaccinated [48]. Some parents in Australia expressed that the vaccine’s effectiveness could not be known because the vaccine had not been circulating long enough. One woman stated, “We’re guinea pigs! The vaccine has not been around long enough because the ‘experts’ do not know the long-term effects. …it hasn’t yet proven to be effective” [40].

Mistrust of any information stemming from pharmaceutical companies was highlighted by participants in Alaska [48]. Fear of alleged nefarious reasons for physicians and pharmaceutical companies recommending HPV vaccinations was evident. A vaccine-eligible young adult asked why American Indian women were being targeted and wondered whether the campaign was meant to decrease their population [41]. Several participants in the same study noted that fear about, and mistrust of, the federal government is persistent. One student observed that vaccinations for Indigenous people have a ‘crazy’ history that results in low trust in the health services system [41].

Lack of effective knowledge dissemination.

In multiple studies, vaccine-eligible young adults, parents/caregivers, and health workers alike expressed a desire for increased understanding of HPV and the vaccine. Participants asked for explicit details about HPV vaccines to allay concerns, to educate their family members, and to make informed decisions about their health, the health of their children and the health of their communities [28, 40, 44].

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. Parents and caregivers stated that insufficient knowledge of the HPV vaccine was a barrier to providing consent for their children [40, 50], and that they would like more information [48, 51]. Parents and caregivers in a Utah-based study described “receiving basic knowledge of the HPV vaccine through their healthcare provider”, but “few had in-depth knowledge about the vaccine” [49].

Despite a pharmaceutical industry marketing campaign in Alaska prior to a study [47], vaccine-eligible youth knew little about HPV, the HPV vaccine, or cervical cancer. Misunderstandings about HPV disease outcomes and modes of HPV transmission were common among vaccine-eligible young adults attending universities in the United States [42], with one student suggesting that low knowledge levels exist in American Indians due to low educational efforts in their communities [41].

Insufficient knowledge of the HPV vaccine was also an issue for the healthcare providers serving Indigenous communities, with one study identifying misunderstandings regarding vaccine eligibility requirements and beliefs about age-appropriateness among providers in Washington State [38]. In a school-based vaccine initiative in New Zealand, over 77% of surveyed teachers and support staff expressed that they would like more information about the vaccine before they could feel comfortable discussing it with their pupils or the pupil’s parents [52].

Lack of culturally appropriate awareness campaigns.

Loring (2008) noted that Indigenous children from families with low awareness of the HPV vaccine are more likely to be overlooked in vaccination programs, especially when HPV and cervical cancer are not talked about within communities. In survey data, Indigenous people reported that one reason they had not consented to vaccination of their son or daughter was that they did not know about the vaccine [34, 35, 41, 46]. Prior to HPV and cervical cancer campaigns in Fiji, only 10% of respondents reported having heard of HPV or the vaccine [46]. A retrospective review of registry data from New Zealand reported that the overall awareness of HPV as a risk factor for cervical cancer was lower among Maori parents than those of European descent [53]. When asked about barriers to HPV vaccine uptake, Indigenous physicians in the United States reported that lack of parental awareness is an issue for their Indigenous patients. Among healthcare providers, a lack of patient awareness about vaccine benefits was listed as one of the ‘top five barriers to HPV vaccination’ at their facilities [54].

Gender- and age-specific disparities in health education delivery.

Some researchers reported knowledge disparities concerning gender equity in contracting HPV; in one study, parents were generally unaware that the HPV vaccine was recommended for males as well as females [49], and female participants reported greater awareness of HPV than their male counterparts [42]. Vaccine-eligible young adults were confused about whether HPV was something men could get [44], and Aboriginal parents residing in Melbourne stated that HPV vaccine promotion should be more gender-balanced [40]. Participants noted that the resources available for HPV vaccination seem biased with female-centric messaging; without considering the cultural sensitivities around educating men about the shared infection of HPV, it would continue to be seen as a ‘women’s disease’ [40]. In certain contexts, specific barriers to consent for men emerged, highlighting how the delivery of HPV health education may be gender-disparate. The need to sufficiently inform men (including single-parent fathers, male grandparents, and so on) was identified as important, especially for sole parents and caregivers who are responsible for providing immunization consent [40].

A Canadian workshop with Indigenous vaccine recipients highlighted issues with age- and culturally-inappropriate health resources for the HPV vaccine [55]. Parents in Australia felt that culturally relevant materials were important resources to create an inclusive information environment for young adolescents [40]. 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. During focus group talking circles in a community gathering in Western Canada, some Elders expressed disappointment to learn that their grandchild had been vaccinated without their knowledge or support, stating that the talking circles were the first time they had heard about HPV [28].

Lack of healthcare provider recommendation.

If their healthcare provider did not recommend the HPV vaccine or provide education, then parents and caregivers were less likely to vaccinate their children [34, 35, 44]. Interview participants from the United States cited weak or inconsistent provider recommendations as barriers to vaccination [56]. Staff turnover, lack of provider time, and recommendation inconsistencies among providers were also 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 [54, 56]. As stated in a study with parents and caregivers in Utah, communication failure through lack of trust would result in parents seeking HPV vaccine information elsewhere [49].

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. Parents in Papua New Guinea said that they did not know what their children’s routine immunizations (outside of HPV) had been for, leaving them unaware as to what their children were protected against, often due to poor health messaging provided by health workers at the time of immunization [57]. Additional and complex issues related to authority in providing consent for vaccination when the vaccine-eligible child lives in a foster-care system were raised in Australia, as well as questions about signing the consent form if they were an unofficial guardian, and if the child is not registered as a ‘ward of the state’ [40]. The HPV vaccine consent processes created apprehension among some Victorian communities, leaving parents expressing frustration with the complexity of the consent form, the challenging or confusing information provided, and the lack of detail on long-term safety. In contrast, despite some complications in understanding the technical information, other participants in the same community found the HPV vaccine consent form had sufficient information to inform their decision [40].

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 [58]. The Maori health expert noted that Maori women are especially vulnerable to health policies designed around the total population, and that these policies are inherently racist and will naturally generate and perpetuate inequities.

Social determinants of health service access.

Even when the HPV vaccine was offered free of charge, a Peruvian study reported that the availability of medical staff, equipment, and facilities can be a barrier for access, especially in remote communities [59]. For those who missed vaccination in a school-based program, lack of health insurance, lack of public funding, and an inability to pay out of pocket prevent older Indigenous people from completing the HPV vaccine series [37, 38, 42, 60]. For Shipibo-Konibo women in Peru, poverty was cited as a barrier in accessing the HPV vaccine [59], and low socioeconomic status was associated with an incomplete HPV vaccination series in Australian reviews of large-scale vaccination programs [43, 61]. Public health and policy leaders in key informant interviews objected to a proposed policy to make the HPV vaccine privately available, citing the potential disparities with low income Maori families being the least able to afford the vaccine for their children [58].

Indigenous people in rural or remote communities face additional barriers in terms of physical access to clinics and transportation issues [42, 43]. Physical relocation [45] and poor school attendance [62] contributed to incompletion of the HPV vaccine series in Peru and Australia, respectively. For some communities in Central Australia, their remote environment created challenges that required collaboration to overcome. To encourage youth to complete the full dose schedule, the support of the entire community was warranted, including the influence of Elders and community networks [40]. The timeliness required in a multi-dose vaccine schedule and issues with patients returning for subsequent doses were also reported by the authors of retrospective reviews examining Australian immunization programs as a barrier to completion of the HPV vaccination as recommended [43, 61].

Beliefs.

Communicating the importance of receiving the HPV vaccine through the lens of ‘cancer prevention’ might be important to achieve optimal HPV vaccine uptake. Australian parents who were also health workers thought it was important to promote the vaccine as a cancer prevention strategy [40], because the perception of future disease prevention would increase vaccine acceptability. In Alaska, one parent said that the desire to protect one’s child against cancer is a part of motherhood [48]. For families who live with the trauma of poor cancer outcomes, shielding their daughter from “one less cancer” was a compelling argument for consenting to vaccination [48]. A preference for promotional messaging focused solely on cervical cancer was also reported by a handful of men, who believed that cervical cancer prevention should be prioritized. So concerned was one community member in Papua New Guinea by what he saw as the burden of the disease in the community, he wanted the vaccine to be promoted “to help young women and even men to prevent this cancer disease” [33].

Affirmative multigenerational and social influences.

Parents and caregivers have a role to play in communicating the importance of the HPV vaccine [48, 51, 52], and interest in vaccination reported by parents has been found to be predictive of future consent for vaccination [36]. Offering HPV vaccine education to all adult women in the community allows all women to adopt continuing roles as community educators of each other [40].

Teachers in New Zealand suggested involving youth as campaigners and role models to provide encouragement for their peers, as well as involving youth-friendly media in HPV vaccination campaigns [52]. The social influence of peer support can mitigate vaccine-related anxiety and encourage vaccine normalization and ownership. In Canada, participants described the children of their community as educators, supporting each other through the immunization process regardless of bravery or fear. The supportive environment for and by youth during the vaccination process was encouraged through community celebration and acknowledgement [28].

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 [38, 41, 46, 59]. This finding was not consistent with an online survey of young female university students in Arizona; those who were unvaccinated demonstrated comparable HPV knowledge to those who were vaccinated against HPV [63].

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 [40]. Sharing information across communities through educational support sessions was considered helpful in normalizing the HPV vaccine, taking ownership of health, and encouraging vaccine-recipient autonomy, regardless of age. Intergenerational health education, as well as the social influence of community leaders and Elders were thought to be necessary components of any vaccine education program. Participants voiced frustration that the Elder women were not able to take part in the conversations due to a lack of knowledge provided specifically to the Elders. Comments about desiring the involvement of wise female women in community HPV education were persistent [40]. Some community members said that they were willing to learn more about the vaccine, especially if the vaccine education opened doors to increased communication with their daughters and granddaughters. Once equipped with reliable health information, parents and grandparents in western Canada felt prepared to support their community’s youth, discuss issues related to sexual intercourse, and foster the community transparency believed to be protective of health [28].

It was suggested that educational efforts must discuss not only the protection afforded by the HPV vaccine, but also frank information about possible adverse effects. Young people, in particular, expressed the need in Papua New Guinea for information on the vaccine’s advantages, disadvantages, and side effects [33]. Parents and caregivers in Australia also thought that, despite what information was included, health education content must be rooted in truth and integrity, and presented at a language level compatible with the adolescent’s age [40]. Increasing a community’s overall knowledge of the vaccine and of the disease, when done in ways that resonate for the community, can motivate hesitant parents to make decisions in favour of the HPV vaccine. A mother in Peru stated that her initial worry over the early age of the vaccine was replaced with a feeling of happiness after she received proper explanation on the topic [59]. Once participants had been provided with transparent, factual information, their attitude toward the HPV vaccine often changed and they felt confident in discussing the HPV vaccine with their child and as a result, provide truly informed consent [40].

For parents in Victoria, Australia, community education was considered vital in the consent process. This education was also critical in unwinding any sexual implications that community members have attached to the HPV vaccine [40]. Equitable community education conducted with cultural and gendered needs in mind might be valuable in overcoming the HPV vaccine barriers associated with sex and cultural taboos. While some mothers in Alaska reported that the decision to consent to vaccinate their children was their decision alone, for some families it was a shared responsibility between partners [48], reflecting that men cannot be excluded from HPV vaccine education. To build consistent community understanding, female focus group participants in Papua New Guinea wanted boys and men to better understand their role in HPV transmission and the risks borne by females and males of cancer caused by the disease [33]. In a study of semi-structured interviews with parents in Peru, the basic needs in terms of health education delivery were outlined as such: provide good information from a trustworthy source, and to both parents [59].

Consistent healthcare provider recommendation.

Healthcare providers making a strong recommendation for HPV vaccination is seen to support Indigenous people in receiving the vaccine [35, 37]. Information received from a healthcare provider is generally trusted provided that there are positive relationships between the healthcare provider and their patients in the community [36, 39, 49, 62]. For healthcare providers serving Indigenous populations in Michigan, best practice to promote the HPV vaccine is to review immunizations at every patient visit, remind them of their eligibility and make strong recommendations for the vaccine [56]. Members of the Association of American Indian Physicians affirmed their willingness to provide HPV vaccinations to both female (98%) and male recipients (88%) [60].

Equity-oriented systems and processes.

Directing resources to create a position for a dedicated immunization nurse [37], or further supporting nurses immunizing in schools [58] are strategies that could help alleviate immunization inequities for Indigenous populations. Out-of-the-box thinking such as ‘door knocking’ to obtain the consent of a parent or caregiver [62], or obtaining verbal parental consent via telephone [37] have been proposed as unique strategies to increase HPV vaccine delivery. Community members from Papua New Guinea expressed the importance of any HPV vaccination campaign timing and the preparatory work required to ensure communities are informed and ready to receive a vaccine prior to its widespread delivery administration [32].

Reminders and follow-up from healthcare providers might be helpful in encouraging parents to complete the consent form for HPV vaccination [43]. The majority of Maori parents in New Zealand said that they would be happy to receive a telephone call reminder, had they not returned the consent form [51]. Communications strategies that address local issues affecting HPV vaccination, including education that increases both provider and patient knowledge about the HPV vaccine, are systems-level changes that have been proposed by public health leaders and healthcare providers alike [54, 58]. Collaboration with the community can mitigate many barriers [62]. To address issues of cultural safety, community leaders should be involved in planning health promotion activities to ensure they are effective [55].

Social and cultural determinants of health.

Physical access to the immunization clinic (or school) supported the receipt of HPV vaccination [62], as did having a high relative socioeconomic advantage [43]. In Australia, interview participants were supportive of the government subsidization of the HPV vaccine because it removes the barrier of cost. One participant stated that a free vaccine would increase the number of girls getting vaccinated [40].

Initiation of the vaccine series at a younger age has been a successful strategy to increase uptake in Indigenous populations. In the United States, Indigenous children who initiated the HPV vaccine series at age 9 or 10 were 2.5 times more likely to complete the series compared to those who started at the recommended age of 11 or 12 [56]. The authors suggest that children who initiate the HPV vaccine series before the recommended age had parents who were more proactive about preventive care, and that clinical implications could be important as far as the timing for providers to communicate about HPV vaccine with parents. Meanwhile, Indigenous parents in New Zealand were significantly more likely than their other ethnicity counterparts to select younger ages to be appropriate for vaccination [51]. It has also been suggested that starting HPV vaccination earlier than the recommended age could result in higher dose completion rates by giving Indigenous children a head start [37].

For Indigenous community members in the United States, participation in a traditional cultural practice was found to be significant. Those who participated in ceremony were two and a half times more likely to receive the HPV vaccine [64].

In one study in Fiji, the majority of parent respondents included their daughter in the decision-making process [46], and in Alaskan focus groups, mother-identifying parents reported they involved their older teenage daughters, as well as their spouses, in the decision about vaccination [48]. Parents in New Zealand reported that 34% would seek the views of their daughters, 42% would seek the views of friends/peers, and 50% would seek the views of their extended family in the decision to vaccinate their child [51]. Involving the whole of the community in the decision and providing a degree of autonomy to the vaccine recipient themselves might mitigate barriers such as distrust and lack of knowledge [40]. Although there were opinions about the complex nature of cancer prevention and sexual health messaging, some participants in Australia voiced the need for HPV vaccine resources to be communicated specifically to young girls, suggesting that early education would encourage widespread acceptance of the HPV vaccine [40].