Exploring human papillomavirus vaccination refusal among ethnic minorities in England: A comparative qualitative study

Abstract Objectives In England, uptake of human papillomavirus (HPV) vaccination to prevent HPV‐related cancer is lower among girls from ethnic minority backgrounds. We aimed to explore the factors that prevented ethnic minority parents from vaccinating, compared to White British nonvaccinating parents and vaccinating ethnic minority parents. Methods Interviews with 33 parents (n = 14 ethnic minority non‐vaccinating, n = 10 White British nonvaccinating, and n = 9 ethnic minority vaccinating) explored parents' reasons for giving or withholding consent for HPV vaccination. Data were analysed using Framework Analysis. Results Concerns about the vaccine were raised by all nonvaccinating ethnic minority parents, and they wanted information to address these concerns. External and internal influences affected parents' decisions, as well as parents' perceptions that HPV could be prevented using means other than vaccination. Reasons were not always exclusive to nonvaccinating ethnic minority parents, although some were, including a preference for abstinence from sex before marriage. Only ethnic minority parents wanted information provided via workshops. Conclusions Ethnic differences in HPV vaccination uptake may be partly explained by concerns that were only reported by parents from some ethnic groups. Interventions to improve uptake may need to tackle difficult topics like abstinence from sex before marriage, and use a targeted format.


| BACKGROUND
Cancer-causing types of human papillomavirus (HPV) cause over 99% of cervical cancers. 1 The virus is spread by skin-to-skin contact, including sexual contact. Vaccination against HPV 2 is offered in England for girls in school year 8 (aged [12][13] and across the world.
Optimal uptake should reduce HPV-related disease.
Around 89% of eligible girls started the 2-dose series in England 3 in 2014/2015, but uptake among girls from ethnic minority backgrounds is lower. [4][5][6] In England, individuals from ethnic minority groups are generally considered to be those from non-White British backgrounds, comprising 20% of residents. 7 Low uptake among ethnic minority groups has been reported across developed countries, 4 although between-country comparisons of uptake by specific ethnic groups is complicated by variations in subgroup sizes and migration histories.
Few studies have investigated these ethnic disparities. A small qualitative study with African parents in northern England reported fear of promiscuity and infertility following vaccination, and worry about the vaccine being new. 8 However, it was not clear how many parents in the study had rejected the vaccine. A qualitative study in southwest England conducted with an ethnically diverse sample not only reported similar findings but also highlighted that language and literacy issues might undermine informed consent, 9  the vaccine. Similar findings have been reported elsewhere, including among African American, Latino, and American Indians in the United States, 10,11 and Somali mothers in the Netherlands. 12 Ethnicity is different from race, nationality, religion, and migration status but can include facets of these factors. 13 Religious beliefs also influence vaccination receipt in minority groups, 14 independent of ethnicity. 15 Some ethnic minority mothers have described that some vaccine concerns stemmed from their religious belief, and not their ethnicity, 16 and a qualitative study with Jewish mothers reported a lack of perceived risk of HPV-related disease because of circumcision and abstinence from sex before marriage, 17 a view echoed by Somali mothers in the Netherlands. 12 However, religious differences in uptake of the vaccine do not always hold across countries. 4

| RESULTS
Interviews were conducted with 33 parents, mainly mothers (n = 32), with an average age of 47 years (Table 1). Fourteen parents from ethnic minority backgrounds had not vaccinated their daughters against HPV (4 had daughters who had started the series but not completed it; "partially vaccinated"). Most were from non-British White or Bangladeshi backgrounds and had a religion. This compares to the London ethnic minority population of whom the largest groups are non-British White and Black African. 19 The majority spoke English at home and were born in the UK.
We also conducted interviews with 10 ethnic minority parents who had vaccinated their daughter and 9 White British parents who had not (1 partially vaccinated; Table 1). See supplementary material for individual participant characteristics (Table S1). All interviews were conducted in English.

| Summary of themes
The reasons that ethnic minority parents gave to explain why they had  (Tables S2-S4). (Table S2) Vaccinating and nonvaccinating parents expressed a wide range of concerns about the vaccine, suggesting that holding some concerns was not sufficient to stop vaccination.

| Concern about side effects
Nonvaccinating and partially vaccinating parents from various ethnic backgrounds expressed concerns about the research behind the vaccine, which made parents worry about potential for side effects.
… the only thing that worries me is … that we don't know the long-term effects … that's the only worry I have (P27, Bangladeshi).
A nonvaccinating Bangladeshi mother and Indian father were wary of vaccines because they had perceived vaccination to be unsafe or painful when they were children. One partially vaccinating non-British White mother perceived that her daughter experienced an allergic reaction after the first dose.
Other concerns about side effects reported by a small number of nonvaccinating parents included concern about the potential for vaccine ingredients to cause adverse reactions, concern that their daughter's immune system was compromised and concern that their daughter was being used "like a guinea pig." [my daughter] was asthmatic … her symptoms started to worsen a little bit … and I think the second dose was one or two months after this … I just couldn't psychologically take it, so I thought, err, you know, with her symptoms, with her immune system, I'd rather not go ahead (P16, non-British White).
Four parents, spread across all groups, described feeling as though their child's interests were not being considered. Parents in all groups recognised the potential for side effects in all medicines.

| Concerns relating to perceptions of risk
Parents in all groups mentioned that the vaccine was not available when they were younger. This made ethnic minority mothers feel the vaccine was unnecessary as they had been fine without it.
A number of nonvaccinating ethnic minority parents believed their daughters were not at risk of contracting HPV or developing cervical cancer, either because they did not believe the virus/disease to be prevalent or because they had no family history of cervical 0cancer.
Others felt that the benefits of vaccination did not outweigh the risks.

| Concern about motivations behind introducing the vaccine
Nonvaccinating ethnic minority and White British parents believed the vaccine was introduced to make money for pharmaceutical companies and expressed lack of faith in the government, the "system," and medical professionals. (Table S3) 3.

| Others providing information
Vaccinating and nonvaccinating ethnic minority parents sourced information regarding vaccine side-effects from others, suggesting that these discussions were not sufficient to stop parents from consenting.
Another parent was told that the number of people getting cervical cancer is "very few and far between" (P17, African).
I asked my friend … because I was new in the UK … "What is this?" She says, "Yes, these are the side effects" (P25, Somali).
A non-British White mother and a White British mother, neither of whom had vaccinated their daughters, described that their friends (a school nurse and a scientist) did not trust the vaccine's development. … there was a girl that died. She had it and then she went into hospital …. She died, and then they traced it back to this vaccination. So that, I suppose, has put me off a bit as well (P2, Caribbean).

| Experience of others
Three nonvaccinating mothers said that their daughter did not want the vaccination and 1 nonvaccinating Somali mother was advised by a health professional not to vaccinate unless her daughter was going to be "doing a lot of sex" (P25, Somali).

| Further research
Parents differed in the extent that they had done further research into the vaccine; only ethnic minority parents said that they did very little, almost exclusively parents who had vaccinated their daughter, but 3 nonvaccinating ethnic minority parents did no further research because their mind was made up from the start. Other parents, mainly those who had not vaccinated against HPV, described doing a lot of research because they felt ill-informed by the NHS information. Others did research to confirm their decision not to vaccinate and some said they always question things.
3.5 | Preventing HPV-related cancer using means other than vaccination (Table S4) 3.5.1 | Illness prevention informed by complementary and alternative medicine and idiosyncratic beliefs Some, mainly nonvaccinating, parents subscribed to schools of thought relating to HPV vaccination that were not consistent with the standard medical model. Some of these beliefs related to complementary and alternative medicine, while others were more idiosyncratic (although may have been held by many people). Two nonvaccinating ethnic minority parents and 1 vaccinating ethnic minority parent mentioned a preference to not use medicines in general, one of whom had never given their child vaccines.
Many parents used methods to prevent illness that were based on these idiosyncratic beliefs, including building immunity "naturally" and preventing cancer/illness with a healthy lifestyle. Almost exclusively, it was ethnic minority parents who had never vaccinated their children who reported using complementary and alternative medicine.
… as long as we lead a healthy lifestyle without any bad habits … I should be able to protect myself from any kind of illness. Like … cancer and stuff like that (P29, Bangladeshi).

| Preventing cervical cancer using approaches other than vaccination
Many parents who had not vaccinated their daughter explained that they would prefer to use approaches other than vaccination to prevent cervical cancer. These included encouraging safe sex and education/ discussion and were mainly mentioned by nonvaccinating ethnic minority parents.
… if we want to avoid HPV, let's go out there and use condoms …. It's … good sexual dialogue with your teenagers. I think that's more important for them than having a vaccination … (P22, non-British White).
Only nonvaccinating ethnic minority parents (n = 5) discussed abstinence from sex before marriage. Sometimes this was discussed in relation to religion by parents who were all practising Muslims.
Two nonvaccinating ethnic minority parents also said that they would encourage their daughter not to be promiscuous.
I always give her advice. "Your body is your body and you will sleep with only one man … if you like someone, just tell him, 'Wait for me in the future …'" (P25, Somali). so unvaccinated women from these communities may still be at risk, even if they abstain from premarital sex. This will be a difficult message to communicate to some parents and may need input from community leaders.

| Study limitations
Cost prohibited translating the recruitment materials into all languages spoken in London. No one approached the study team as a result of translated materials or asked to conduct the study in Somali or Bengali, but there remains the possibility that we were not able to access non-English speaking/reading individuals. Only 0.6% of London residents do not speak English. 28 It is unlikely that this small population, many of whom will not have daughters eligible for vaccination, will make a huge impact on vaccination coverage. Only 1 father participated, which may have been because the recruitment materials were more likely to have been received by the mother; most participants were recruited via correspondence sent via their daughter's school.
However, every mother described that the decision was made by her or was shared. A minority of interviews (n = 7) were conducted via telephone. It is possible that information was withheld or was more likely to have been given using this different approach to data collection, although this was not obviously apparent.

| Clinical implications
Ethnic disparities in uptake of HPV vaccination in England may in part be explained by concerns that were only reported by parents from some ethnic minority groups, as well as differences in the prevalence of concerns about the vaccine that are held by nonvaccinating parents in general. Interventions to increase uptake of the vaccine will need to take a different approach to those that have been tested to date. Such interventions may need to tackle difficult topics like abstinence from sex before marriage, as well as using a targeted format.