Knowledge and Acceptability of the HPV Vaccine ...

Knowledge and Acceptability of the HPV Vaccine Among Ethnically Diverse Black Women Rula Wilson, Diane R. Brown, Makini A. S. Boothe & Caroline E. S. Harris

Journal of Immigrant and Minority Health ISSN 1557-1912 J Immigrant Minority Health DOI 10.1007/s10903-012-9749-5

1 23

Your article is protected by copyright and all rights are held exclusively by Springer Science +Business Media New York. This e-offprint is for personal use only and shall not be selfarchived in electronic repositories. If you wish to self-archive your work, please use the accepted author’s version for posting to your own website or your institution’s repository. You may further deposit the accepted author’s version on a funder’s repository at a funder’s request, provided it is not made publicly available until 12 months after publication.

1 23

Author's personal copy J Immigrant Minority Health DOI 10.1007/s10903-012-9749-5

ORIGINAL PAPER

Knowledge and Acceptability of the HPV Vaccine Among Ethnically Diverse Black Women Rula Wilson • Diane R. Brown • Makini A. S. Boothe Caroline E. S. Harris

•

Springer Science+Business Media New York 2012

Abstract The purpose of the study was to examine HPV vaccine knowledge and acceptability among ethnically diverse Black women. Forty-four women were interviewed in 6 focus groups (2 African American, 2 English-speaking Caribbean, 1 Haitian, and 1 African). Thematic content analysis was used to generate common concepts and themes and to compare findings across groups. There was varied but limited knowledge and confusion across ethnic groups about the HPV infection and vaccine. African and Haitian women had the least knowledge. Overall, women were generally receptive toward the HPV vaccine for girls but unclear about the need to vaccinate boys. Concerns about the HPV vaccine were mainly related to side effects/ safety and vaccinating children at a young age. Healthcare provider’s recommendation of the vaccination was important for decision making. Educational interventions with Black women about HPV vaccination should recognize cultural beliefs that vary by ethnic group. Keywords Human papillomavirus (HPV) Cancer prevention Black women Health disparities Ethnicity

R. Wilson (&) School of Nursing, University of Medicine and Dentistry of New Jersey, 65 Bergen Street, Room 1017, Newark, NJ 07102, USA e-mail: [email protected] D. R. Brown C. E. S. Harris School of Public Health, University of Medicine and Dentistry of New Jersey, Newark, NJ, USA M. A. S. Boothe School of Public Health, Institute for the Elimination of Health Disparities, University of Medicine and Dentistry of New Jersey, Newark, NJ, USA

Background The US Cancer Statistics Working Group data on cervical cancer show that Black women have higher morbidity rates than White women and higher mortality rates than both White and Hispanic women [1]. The age-adjusted cervical cancer mortality rate in 2007 for Black women was 4.3 per 100,000, compared to 2.2 and 3.0 for White and Hispanic women, respectively. These data suggest the inability of current interventions to improve access to and utilization of healthcare services for Black women. The data may also reflect a lack of understanding of the cultural diversity within the Black population and how it may impact knowledge, attitudes and practices for the prevention of cervical cancer. The Human Papillomavirus (HPV) is a known risk factor for cervical cancer [2]. The US Food and Drug Administration (FDA) has recently approved two vaccines to prevent HPV infection: the HPV Quadrivalent Vaccine [3] and the HPV Bivalent Vaccine [4]. Both vaccines require a series of 3 injections within 6 months. The Advisory Committee on Immunization Practices [5] recommends vaccinating females 9–26 years old and, more recently, males 11–26 years old. The CDC [6] reported that Black adolescents and adolescents living below poverty level have significantly lower rates for the HPV vaccine 3-dose series completion (65.4 and 57.3 %, respectively) compared to their White counterparts and those at or above poverty level (73.2 and 74.7 %, respectively; p \ 0.05). Studies have reported low levels of knowledge about HPV infection among Black women [7–9]. Black women lack knowledge about HPV as a cause of cervical cancer and a sexually transmitted infection (STI) that affects both women and men [7, 10, 11]. Studies have also reported low levels of knowledge about the HPV vaccine and vaccination

123

Author's personal copy J Immigrant Minority Health

guidelines [7, 10, 11]. Black women were found to be generally favorable toward the HPV vaccine [9, 12–14]. However, Cates et al. [10] reported that Black women had lower intentions to use the HPV vaccine than White women. Factors that influence the acceptability of HPV vaccination among Black populations include healthcare provider recommendation, school vaccination requirements, prior diagnosis of an STI, the desire to prevent cancer and the belief that vaccination is related to a parent’s responsibility to protect one’s child [12, 15–18]. However, a study found that mothers did not believe the vaccine would benefit their male children [13]. Watts and colleagues reported that protection of women against developing cervical cancer was not found to be a motivating factor for vaccinating boys [14]. Common barriers for HPV vaccination are lack of information about side effects and safety, mistrust of vaccines, and cost/insurance, young vaccination age, and religious values [9, 15, 18]. African Americans have demonstrated skepticism about the vaccine and concerns about long-term side effects, with reference made to the Tuskegee Syphilis Study [19]. In summary, only a few studies to date have explored HPV knowledge, HPV vaccine knowledge or HPV vaccine acceptability among diverse Black women. According to the 2007–2009 American Community Survey, over 5 million people living in the US report having West Indian and Sub-Saharan African ancestry [20]. Despite these large numbers of Blacks with varied ethnic ancestry, research on cervical cancer prevention among Black sub-populations is lacking. Although some studies have included Black women in their study population, findings did not identify differences specific to Black participants. The few studies that focused on Black women either included only African American women or did not report differences across Black ethnicities. Most studies have used the terms ‘‘African American’’ or ‘‘Black’’ but did not differentiate between foreign-born Black women and US-born Black women whose ancestry reflects many generations in the US with a historical legacy of slavery [21]. Studies are lacking on understanding the similarities and differences for Black women of different ethnicities, particularly Haitian, African, and Caribbean women. This gap in research limits the development of evidence-based interventions to promote HPV vaccination among diverse Black women. The Health Belief Model (HBM) [22] is a widely used theoretical framework for understanding health behaviors [23], including HPV vaccination [24–27]. The major constructs from the HBM related to attitudes towards HPV vaccination include perceived threat, benefits, barriers, and facilitators of HPV vaccination. However, the traditional HBM does not recognize the considerable influence of culture on health and health behaviors. Therefore, this study utilizes the cultural HBM framework developed by Lim and colleagues [28] in recognition of the need to

123

address cultural factors that influence health behaviors, and in particular HPV vaccination among diverse Black women. The differing cultural views and experiences related to cancer and its prevention voiced among ethnically diverse Black women, may have implications for their attitudes and practices related to HPV vaccination. For example, socio-cultural norms and overall attitudes toward vaccines have been associated with the intent to vaccinate against HPV as well as HPV vaccination status [26]. Thus, the purpose of this study was to address these gaps in research on HPV knowledge and vaccine acceptability among Black women of various ethnic backgrounds. The study focused on the following four objectives: (1) to examine the knowledge of the HPV among ethnically diverse Black women; (2) to ascertain the knowledge about HPV vaccination in an ethnically diverse group of low income Black women; (3) to assess HPV vaccine use and acceptability for children; and 4) to understand the facilitators and barriers influencing decision making. The results of this study provide insight for development of targeted educational interventions promoting primary cervical cancer prevention for ethnically diverse low income Black women.

Methods This is a qualitative study of HPV knowledge, attitudes and beliefs about HPV vaccination among ethnically diverse Black women, using focus groups. The study was approved by the UMDNJ Institutional Review Board. Study participants were recruited in 2010 from two sites of an urban federally qualified health center (FQHC) that serves a large ethnically diverse Black population, a number of whom are immigrants. Participants were recruited through direct invitation, advertisement posters, and word of mouth. Six focus groups were conducted at the recruitment sites with 5-10 participants each, for a total of 44 women: two groups of African American women (43.2 %), two groups of English-speaking Caribbean (ESC) women (27.3 %), one group of Haitian women (18.2 %), and one group of African women (11.4 %). The focus group with Haitian participants was conducted in Creole, while all other focus groups where conducted in English. All Haitian participants were born in Haiti; African participants were born in Ghana and Nigeria; and ESC participants were born in Antigua, Barbados, Dominica, Jamaica, and St. Lucia. Each focus group session took 1–2 h and was audio-taped. English and Creole speaking facilitators conducted the focus groups. Prior to the start of the focus group, participants were asked to complete a demographic background questionnaire


pertaining to their source of primary care services, most recent Pap test, and knowledge about HPV. The focus group questions are presented in Table 1. Participants received light refreshments and a $20 gift card to a local grocery store as an incentive. Because the focus group discussions revealed considerable lack of knowledge regarding HPV infection and vaccination, the focus group facilitators led a brief educational session at the end of the focus group to correct misconceptions and answer any questions. Written information about cervical cancer and HPV was also distributed to participants in English and Creole. Table 2 shows the demographic characteristics of the study sample. Approximately half of participants were between 30 and 49 years of age, and nearly two-thirds spoke English as their primary language. Most of the participants were single (42.9 %), but nearly a third were married or living with a partner. Overall, 67.4 % had high school education or less and 73.0 % reported annual

Table 1 Sample focus group questions Part 1: Knowledge of human papilloma virus (HPV)

income less than $15,000. Less than half (42.5 %) were covered by Medicare or Medicaid and 29.5 % had no insurance. A substantial portion of participants sought primary health care services from the FQHC (39.5 %). The focus group discussions, in both English and Creole, were transcribed verbatim to capture the essence and meaning of the data. Data analysis consisted of a thematic content analysis. Data analysis consisted of a thematic content and standard focus group analysis techniques [29]. Two authors with a cultural and linguistic background similar to the study population independently reviewed the transcripts and meeting notes multiple times and identified common themes. The two authors then compared their findings and derived study themes along with verbatim phrases. Study results were reviewed with the remaining coauthors. Through the process of coding, significant statements and concepts were identified and grouped together to form themes. A coding scheme was used to identify similarities in responses, conduct group comparisons, and provide quotes supporting the identified concepts and themes. Table 3 provides a summary of the study results.

1. What do you know about HPV (the acronym)? 2. Where/how did you learn about HPV? 3. What do you know about HPV infection? Probe: How is it transmitted? Who is at risk for the infection? Etc. 4. What factors increase a woman’s risk of HPV infection? 5. How serious do you think HPV infection is? Part II: Knowledge of HPV vaccination 1. What do you know about HPV vaccination? Probes: What do you know about the HPV vaccination guidelines? Who should get the vaccine? At what age? How many shots? Etc. 2. Where/how did you learn about HPV vaccine? Part III: Views toward the HPV vaccine 1. How do you feel about the HPV vaccine overall? 2. What are your views and concerns related to this vaccine? 3. What would motivate women to get the HPV vaccine? 4. What would discourage women from getting the HPV vaccine? Part IV: Attitudes towards HPV vaccination for daughters and sons 1. What would motivate someone to vaccine their children? 2. What would discourage someone from vaccinating their children? 3. Has your child been vaccinated? Tell us more about your decision. 4. How do you feel about vaccinating your daughter? Probe: At what age? What factors would influence your decision? Etc. 5. How do you feel about vaccinating your son? Probe: At what age? What factors would influence your decision? Etc.

Results Knowledge of the Human Papillomavirus Responses to the demographic background questionnaire indicated that more than half of the participants (56.1 %) had never heard of HPV. Answers to the question, however, varied by ethnicity with 63 % of African American and 50 % of ESC women having heard about HPV while none of the Haitian or African participants had previously heard about HPV. This was consistent with the discussion in the focus groups, which revealed an overall limited knowledge and confusion about HPV and its connection with cervical cancer. One African American participant attributed her lack of knowledge of HPV to her provider: Why didn’t they, you know, tell me about this earlier? Like, when you go to the doctor to get checked…he don’t talk about this at all, nothing in reference to cervical cancer or HPV or anything. Why wouldn’t that be something they would talk to you about? Participants in all but the African group were familiar with the acronym HPV but could not correctly recall what the letters meant. African American women had the greatest awareness of HPV and familiarity with the acronym, but still lacked specific knowledge about HPV risk factors and transmission. Also, ESC participants lacked

123

Author's personal copy J Immigrant Minority Health Table 2 Demographic characteristics of study participants (N = 44) Variable

% (n)

Ethnic group African American

43.2 (19)

Haitian

18.2 (8)

English-speaking caribbean (ESC)

27.3 (12)

African

11.4 (5)

Primary language English Creole Multiple

61.4 (27) 4.5 (2) 34.1 (15)

Age group 18–29 30–39

9.1 (4) 11.4 (5)

40–49

40.9 (18)

[50

38.6 (17)

Children No children

13.6 (6)

At least 1 child, age 9–26

52.3 (23)

All children under 9 All children above 26

6.8 (3) 18.2 (8)

Educational level Less than High School

23.2 (10)

High School or GED

44.2 (19)

Some College or Higher

32.6 (14)

Income \$14,999

73.0 (17)

$15,000–$29,000

18.9 (7)

$30,000–$60,000 Marital status

8.1 (3)

Single

42.9 (18)

Married or living with partner

31.0 (13)

Divorced or separated

11.9 (5)

Widowed

14.3 (6)

Insurance Medicaid

38.6 (17)

Medicare

4.5 (2)

Private insurance

11.4 (5)

Other

9.1 (4)

None

29.5 (13)

Multiple

6.8 (3)

I think it’s human Papill virus, or something like that. When you have it, it’s like you’re more prone to develop cervical cancer. – ESC I know the name but I don’t know what it is. – African American HPV and cervical cancer are the same thing? – African American Yes once they [girls] are about 10 and they are beginning to develop they can get it. I do not know what causes it, if it’s because of estrogen, from eating meat, or other chemicals. – Haitian I don’t know about that one. – African Some women made reference to seeing commercials about HPV and cervical cancer on television; however, there was still confusion about HPV and cervical cancer. An ESC participant stated, They’re advertising it on TV, and I’m like, ‘cervical cancer?’ Also, a Haitian participant explained, I have seen commercials about it but I don’t know anything. What causes it? A few questions examined the participants’ understanding of the seriousness of the HPV infection as well as its association with cervical cancer. The focus group facilitator began by asking about awareness of STIs. Study participants across all ethnic groups listed many of the STDs and STIs, but did not identify HPV as an STI. Additionally, most participants across all ethnic groups were unaware that HPV causes cervical cancer. There were many misconceptions about HPV infection, some of which contributed to its perceived seriousness. A Haitian participant thought that HPV can result in the end of menstruation: Since it is related to the genitals, it can cause you not to get you menses anymore or it can cause cancer or something else. African American and ESC women thought that HPV is serious because it leads to infertility: It could prevent a person from having a child (ESC); It could prevent you from having children, can’t it? (African American). In the ESC group, women thought that HPV is related to lack of circumcision: They say that if you don’t circumcise the guys, they can pick up any infection. Well, what I heard said, most doctors have said it’s 50/50. You don’t have to be circumcised to get infections.

Source of primary health care services FQHC

39.5 (17)

Private doctor Hospital

14.0 (6) 16.3 (7)

Other

18.6 (8)

Multiple

11.6 (5)

specific knowledge of HPV and were split evenly in their familiarity with the term. Haitian and African women were least knowledgeable about HPV.

123

Knowledge of HPV Vaccination The majority of participants mentioned hearing about HPV vaccination on TV commercials; and some even mentioning specific trade names: I see the commercials on TV. In the commercials they said ‘not me, not yet’ (African American). Every time they bring the commercial on the TV, I’ve been just sitting there watching, just curious, like what vaccine is that? (African). An ESC woman mentioned

Author's personal copy J Immigrant Minority Health Table 3 Summary of study results Knowledge of HPV All groups

Overall limited knowledge and confusion about HPV and its connection with cervical cancer

(common themes)

All but the African women were familiar with the acronym HPV, but could not correctly recall what the letters meant Several made reference to commercials about HPV and cervical cancer on television Some confused HPV with cervical cancer Listed many of the STDs and STIs, but did not identify HPV as an STI Most were unaware that HPV causes cervical cancer Considered HPV infection serious only after being informed of its connection to cervical cancer

African American groups

One participant attributed her lack of knowledge of HPV to her doctor Had the greatest awareness of HPV and familiarity with the acronym, but still lacked specific knowledge Some thought that HPV infection is associated with infertility

ESC groups

Lacked specific knowledge of HPV and were split evenly in their familiarity with the term Some thought that HPV infection is associated with lack of circumcision Some thought that HPV infection is associated with infertility

Haitian group

Least knowledgeable about HPV, along with African women

African group

Were not familiar with the acronym HPV

One participant thought HPV can result in the end of menstruation Least knowledgeable about HPV, along with Haitian women Knowledge of HPV vaccination All groups

Most reported hearing about HPV vaccination on TV commercials; and some mentioned specific trade names

(common themes)

All lacked understanding of HPV vaccination guidelines (e.g., age, target groups, frequency, number of shots, etc.)


One participant mentioned reading pamphlets about HPV and its vaccine at the doctor’s office

Several were unable to differentiate between the HPV vaccine and the HPV virus

ESC groups

One participant mentioned hearing on TV that the HPV vaccine protects from genital warts A few participants thought that not being sexually active precluded them from thinking about HPV and the need for HPV vaccination (i.e., did not think about their previous and future sexual activity as risk factors for HPV infection)

Haitian group

Had various misinformation about the vaccine (e.g., given only for women, every year or 6 months, or from beginning of puberty to menopause)

African group

Same as common themes

Women’s views toward the HPV vaccine All groups

Acknowledged that vaccines in general are an important form of prevention and part of the desire to take care of one’s health

(common themes)

Distrust for vaccines in general because of possible side effects, which influenced their attitudes about the HPV vaccine (some discussed the hearing about the side effects of the Flu vaccine and the controversy surrounding childhood vaccinations and the risk of autism as a source of concern for all vaccines)


More favorable toward the HPV vaccine

ESC groups

Uncomfortable and uncertain towards the vaccine, specifically related to safety and the unknown long-term impact

Haitian group

Uncomfortable and uncertain towards the vaccine, specifically related to safety and the unknown long-term impact

African group

More favorable toward the HPV vaccine

Concerns about insurance coverage as well as potential interaction with other medical issues and medications

Least favorable group toward HPV vaccine HPV vaccine acceptability for children All groups

Hesitancy about getting the follow up shots among some of the women who initiated the HPV vaccine (only the first or second shot)

(common themes)

Open and receptive toward the HPV vaccine for girls but indicated the need for more information about the side effects Concerned about the vaccination age for younger girls (i.e., the age guidelines were too young) Unclear about the need to vaccinate boys Had concerns about safety and expressed their need for more information about vaccinating boys Favorable toward vaccinating boys only after the focus group facilitators explained the indication for male vaccination More accepting of vaccinating at a younger age for boys more than girls Most did not believe that the HPV vaccination would encourage sexual activity and/or engaging in risky sexual behavior. A few disagreed


Not in favor of mandatory HPV vaccination

123

Author's personal copy J Immigrant Minority Health Table 3 continued ESC groups

Felt that vaccinating 9–10 year old girls is too early More comfortable with beginning vaccination at 12–14 years of age

Haitian group

One participant indicated regrets over vaccinating her daughter and felt that she did not get adequate information about the HPV vaccine from the healthcare provider

African group

One participant indicated that she may not get the second dose of the vaccine for her daughter because of the negative media coverage Felt that vaccinating 9–10 year old girls is too early

Barriers and facilitators of HPV vaccination ALL groups

Barriers

(common themes)

Lack of information about the vaccine’s safety and possible side effects (most would consider vaccination if they were adequately informed about the vaccine’s safety) Early vaccination age (no group could agree upon a minimum vaccination age) Having to discuss the HPV vaccine’s purpose with children, which may prompt or necessitate a discussion about sexuality (most felt uncomfortable about having such a discussion with a 9 or 10 year old child) Facilitators: Parents’ obligation to protect their children from infections Recommendation of a healthcare provider

African American groups ESC groups

Negativity from healthcare providers as barrier for HPV vaccination Concerned about whether the child’s consent should be obtained before getting vaccinated Felt the vaccine should be listed on the vaccination form in order to ensure that healthcare providers are providing information to the parents More open to the HPV vaccine if their healthcare provider explained it to them.

Haitian group

Same as common themes

African group

Concerned about whether the child’s consent should be obtained before getting vaccinated as barrier Negative media coverage as a barrier

that she heard on TV that the HPV vaccine protects from genital warts. Of all study participants, only one African American participant mentioned reading pamphlets about the virus and vaccine at the doctor’s office. Women across all groups lacked understanding of HPV vaccination guidelines (e.g., age, target groups, frequency, number of shots, etc.). Haitian women specifically had various misinformation about the vaccine (e.g., given only for women, every year or 6 months, or from beginning of puberty to menopause). Several women were unable to differentiate between the HPV vaccine and the HPV virus. A few ESC participants also believed that not being sexually active precluded them from thinking about HPV and subsequently about the need for HPV vaccination. They did not think about their history of sexual activity or the possibility of future sexual activity as risk factors for HPV infection: I don’t have to worry about HPV if I’m not sexually active, right? They would have to tell me why am I taking it, what it’s gonna prevent, because if I’m not having sex, why would I need the vaccine? Women’s Views Toward the HPV Vaccine All groups acknowledged that vaccines in general are an important form of prevention and part of the desire to take care of one’s health: You need vaccines to protect yourself

123

(Haitian). An ounce of prevention is worth a pound of cure (ESC). However, some women across ethnic groups expressed their distrust for vaccines in general because of possible side effects. Some women mentioned hearing about the side effects of the Flu vaccine. A few women also mentioned the controversy surrounding childhood vaccinations and the risk of autism as a source of concern for all vaccines. There’s no reassurance. That’s why I’m afraid. – ESC I understand that these vaccines… basically, you’re being treated like a guinea pig. – ESC Just like the swine flu vaccine someone took it and as she was walking, instead of her moving forward, she was moving backwards. It was in the news. – Haitian … No, I’m scared, because my family, every time they take the flu shot, they get sick…So it [the HPV vaccine] scares me. I don’t want to take it. – African It’s like I took the H1N1 and I said, ‘‘I’m trying to protect myself,’’ but I’m saying I wonder [what] the risks are in me taking that shot. – ESC I think maybe the parents are …talking about what it’s causing—what do they call it? Autism—and so here’s another one of them. – ESC


Women’s concerns about vaccines in general influenced their attitudes about the HPV vaccine and its possible risks and side effects. Several women across groups were also concerned about insurance coverage as well as potential interaction with other medical issues and medications. African American and African participants were more favorable toward the HPV vaccine, while ESC women were uncomfortable and uncertain towards the vaccine specifically related to safety and the unknown long-term impact. Haitian women were the least favorable among all groups, mainly because of their fear of side effects. I think there are a lot of risks involved… like heart attacks and stuff like that, heavy bleeding or whatever. – ESC You do not know what type of effect it will have on you. – ESC Somebody could be taking 10 medications because of illnesses that they have, and this might not mix with one of those medications. They might not wake up tomorrow morning. – African American It’s safe as far as the people they have tested on, used to test it on, but it still might not be safe for everyone’s system. Everybody’s body is different. – African American HPV Vaccine Acceptability for Children Over half of the women (52.3 %) had children eligible for the HPV vaccine (i.e., 9–26 years old). In addition, several participants mentioned having eligible nieces, nephews, and grandchildren whose lives they influence: As far as children, that’s not a concern for me, but I do have nieces and nephews that I do have a great deal of concern for… so I’m trying to gain some information so I can take it back to my family members (African American). Most of the women had not vaccinated their daughters. Only 4 women indicated that they had their daughters vaccinated and one woman took her nieces to get vaccinated. None reported having their sons vaccinated. Overall, women indicated that a parent or guardian might vaccinate their child to protect her/him from becoming ill. For example, a Haitian participant stated, …[A]s long as I can protect my child from a lot of sicknesses it’s good. Also, an African woman explained, It’s good to give it to them…to protect them. Some of the women who initiated the HPV vaccine (only the first or second shot) expressed hesitancy about getting the follow up shots. One Haitian woman indicated regrets over vaccinating her daughter and felt that she did not get adequate information about the HPV vaccine from the doctor: …I am concerned about that because I gave it

to my daughter. I now regret it because I did not know enough about it. An African woman indicated that she may not get the second dose of the vaccine for her daughter because of the negative media coverage: My daughter took one of the first [shots], but I don’t think she took the second. We heard again in the news that it’s not good anymore. Overall, women in all ethnic groups were open and receptive toward the HPV vaccine for girls but indicated the need for more information about the side effects. Some were concerned about the vaccination age for younger girls. Women understood that vaccination should occur before children are sexually active, but still felt that the age guidelines were too young. In particular, ESC and African women felt that vaccinating 9–10 year old girls is too early; while ESC women felt more comfortable with beginning vaccination at 12–14 years of age. African American women were not in favor of mandatory HPV vaccination. …[A] lot of parents said they’re not going to give it to their daughters because of side effects… – African I would not give it to younger than 12 or 13. I did it but I regret it because she is still young. If I waited they may have discovered more things about the vaccine as far as how it affect or not affect people. – Haitian I think that age [nine] is still too young. Regardless [of] girl or boy. – ESC [Y]ou can’t force somebody to do something like that …It really would be a good thing if they agreed on they own or their parents agreed on their own to have them get this shot to prevent [them] from getting sick later on in life, but to make it mandatory, like, ‘‘I’m gonna force you to get this shot whether you want it or not,’’ I don’t think that should be. That’s just my opinion. – African American Make it their option, but it’s out there, just like every other drug and whatever medicines. It’s out there, you got a choice. You can use it, or you don’t. – African American Most women were unclear about the need to vaccinate boys. Women expressed that they would be favorable toward vaccinating boys only after the focus group facilitators explained that sexually active boys can transmit the HPV infection to girls, and that these boys are also at risk of genital warts and certain types of cancers. However, they still had concerns about safety and expressed their need for more information. Some were more accepting of vaccinating at a younger age for boys more than girls.

123


Boys can’t get cervical cancer, I don’t think – African American

educated on it, then you have to decide if it’s good for your daughter or your son. – ESC

I have not heard that it can be used in men…I thought [HPV] was only in women – Haitian

It’s okay as long as it doesn’t have side effects. – African

I thought it [the vaccine] was only for women. –Haitian

Early vaccination age was also voiced as a barrier to vaccination of one’s children. However, no group could agree upon a minimum vaccination age. Although early vaccination age was a barrier, the belief that parents are obligated to protect their children from infections served as a facilitator of HPV vaccination. An African woman explained that a parent’s role to protect his/her child is important especially when the parent is aware that their child is sexually active. Further, some women felt that a barrier for the vaccine was having to discuss its purpose with their children, which may prompt or necessitate a discussion about sexuality. Women felt uncomfortable about having such a discussion with a 9 or 10 year old child. African and ESC women were particularly concerned about whether the child’s consent should be obtained before getting vaccinated.

My son isn’t sexually active yet - I don’t think so anyway - but I will consider having him vaccinated. –ESC Boys experiment at a younger age than girls…so give them the vaccine at an early age. – ESC The majority of women did not believe that the HPV vaccination would encourage sexual activity and/or engaging in risky sexual behavior. However, a few women expressed that the protection offered by the HPV vaccine may encourage boys and girls to have sex. Some women explained that this would depend on the child’s upbringing and value system as well as peer and partner pressure. I think it will result in promiscuity because they know they are protected from diseases. – Haitian If you have a daughter who’s sexually active and you put her on the pill, it doesn’t make her go and have sex with everybody… – ESC It may make them scared to have sex because of the risks. – ESC …If the child does not have instilled values. – Haitian If you tell them what it is (the HPV vaccine), they probably want to have more sex. – ESC Barriers and Facilitators of HPV Vaccination The most common barrier of HPV vaccination was lack of information about the vaccine’s safety and side effects. With regards to vaccinating their children, participants among all groups mentioned that they would consider vaccination if they were adequately informed about the vaccine’s safety. Do more studies on the vaccine. Sometimes they say the vaccine is good and then a few years after that you hear someone died because of it or it is making things worse. – Haitian I would have to be more educated about it before I would recommend it. I wanna know what I’m recommending. – African American They say ‘knowledge is power,’ you know. So you gotta be educated on it before you do it. After you get

123

What about if you have a 9 year old girl, and you want to take her to the clinic to take the shot, she will ask you questions. ‘Why are you taking this shot? What kind of shot is that?’ Because nowadays, kids are very smart, they ask questions. (She’ll) be asking me, ‘Why, what kind of shot is it? If I take it, what is it going to do?’ And then what I will do? Lie or tell the truth? – African Caribbean parents…they have this mentality, you know [their children] can’t open up to them about certain things, because of their reactions. – ESC Most participants believed a health care provider’s recommendation and thorough explanation may influence their decision to vaccinate their children. Additionally, an ESC woman mentioned that children might be more open to the HPV vaccine if their doctor explained it to them. Some ESC women felt the vaccine should be listed on the vaccination form in order to ensure that physicians are providing information to the parents. [I]t’s the doctor…they’re supposed to tell you about that. – African American I talked to the doctor about it. That’s how I knew it was in 3 parts. That’s what made me get it for [my nieces]. – African American Before [my daughter] went away to high school, the doctor encouraged me to give it to her … –Haitian The providers should explain what it’s (HPV vaccine) all about to the parents. – ESC


If my daughter is going to get anything like that [the HPV vaccine], she’s going to question it. She’ll ask, ‘Who are you to give me that? You need to take me back to Dr. J—.’ And when she gets to Dr. J—, he can give her anything, she’s not going to ask what it is (because) he’s been her pediatrician from her first day to now… – ESC If you’re gonna give it from age 9, the best way to do it is to include it in their immunizations…’cause a lot of parents still don’t know about it (HPV vaccine), and then their children won’t get it. – ESC On the other hand, several women, particularly African Americans, expressed that negativity from the health care provider was a barrier to vaccination. For example, an African American woman explained that when she asked her doctor about HPV, the health care provider became unwilling to provide information, which discouraged her from considering getting the vaccine: I asked the doctor about the HPV, and she says, ‘Why are you asking me about that? You don’t have it.’ This sentiment was echoed by another African American participant who felt that the doctor dismissed her question so as not to appear lacking knowledge in this area: A lot of doctors don’t want to tell you, ‘I don’t know too much about this medication.’… They should be honest and tell you, ‘But I can send you to somebody who could help.’ Overall, cost and insurance coverage were not perceived as barriers for the vaccine: $450 is better…Instead of going into debt because of chemo (ESC). I would set up a payment plan and that’s it… Because if it’s too expensive and I can’t afford it, … I’ll have to tell them the honest truth, I can’t afford it. But if they can set up a payment plan I’ll do it. But if my insurance can cover it, I’ll take it. That’s it (ESC). Most women across groups were not aware that the federally qualified health center offered low and no cost vaccine. Finally, African women mentioned negative media coverage as a barrier: There was a lot of controversy and a lot of parents said they’re not going to give it to their daughters because of side effects and some of us say, you know, like me, I want my daughter to take it, but there was a news that said there’s the side effects. I don’t know.

Discussion This study examined HPV knowledge and vaccination acceptability among African American, ESC, Haitian and African women in a low-income, urban population. Our findings are consistent with other studies in showing that that knowledge about HPV infection was generally low and varied by Black ethnicity, with Haitian and African women being the least familiar [8–10, 19, 24]. Further, this study

found that women across Black ethnicities did not recognize HPV as an STI, similar to the findings of another study of Haitian women [8]. Interventions should not only educate women about HPV infection and its link to cervical cancer, but also address concerns among specific ethnic groups. For example, interventions involving ESC women should address their concern about the connection between HPV infection and lack of circumcision, while interventions with ESC and African American women should discuss their concerns about infertility. Further, interventions targeting Haitian women should address the misconception that HPV can result in the end of menstruation. Our findings show that knowledge about HPV vaccination is generally low across all groups, but particularly among Haitian and African women. African and ESC women require more skills to discuss HPV vaccination with their children. Most women heard about the HPV vaccine through televised drug company commercials. This is consistent with other studies that reported broadcast media as a primary source of information for Black women [7, 16]. Future research and interventions may examine the importance of media for Black women as a source of health information as well as the use of specific media outlets for Black women of different ethnic backgrounds. This indicates the need for more research about health information behaviors among ethnically diverse Black women, particularly in low income, urban communities. It was clearly evident that more education is needed across all ethnic groups about the HPV infection and vaccination. In this study, most of the participants were favorable towards the HPV vaccine, which is consistent with other studies [9, 13, 14]. However, this study shows varied levels of acceptability by Black ethnicity, with Haitian women being the least accepting of all groups. Interventions must address mistrust for vaccines overall when engaging with African American, ESC, and Haitian women. Further, women were accepting of vaccinating both girls and boys, although they were initially unclear about the need to vaccinate boys, a sentiment reported in other studies [13, 14]. Women differed on the age at which to vaccinate one’s child. The few women who have initiated vaccinating their daughter expressed hesitation about completing the vaccine because of concerns about safety, side effects and the need for more information. This finding is consistent with the CDC [6] report that Black adolescents and those living below poverty have significantly lower 3-dose completion rates than White adolescents and those living at or above poverty. The findings of our study suggest that research is needed to evaluate the effectiveness of various strategies and interventions to promote completion of the HPV vaccine 3-dose series, especially among ethnically diverse and low-income populations.

123


The belief that HPV vaccination may encourage sexual behavior was not a prominent concern among the participants in this study, which is consistent with the findings of other studies [14, 15, 24]. Some of the factors influencing acceptability of HPV vaccination that women identified in this study were also reported by other studies such as the need for information about the vaccine [19]; concerns about safety and side effects [9, 13, 24]; and healthcare providers’ recommendation [15, 17, 24]. All groups expressed the belief that vaccination is part of a parent’s responsibility to protect one’s child [9, 13, 14, 24]. Having a provider’s recommendation of the vaccine was of paramount importance for HPV vaccination across all groups. This study was unique in that the findings demonstrate the need for the provider’s explanation of the vaccine not only to the parent but also to the child. Given that this is a qualitative study, the findings may not be generalized to all low-income ethnically diverse Black women. Our sample of Haitian and African women was particularly small, reflecting a need to further explore the health beliefs of this population. Women over age 50 were included in the study in recognition of social and cultural considerations specific to ethnically diverse Black populations. In many instances among African American and immigrant families, older women are part of multigenerational households with younger children at home and may also have an important influence on health education and decision-making in their families [30–32]. Although members of the extended family cannot provide legal consent for vaccination, participants mentioned the role they have in the lives of their younger relatives. These findings suggest that interventions targeting this population should be inclusive of members of the extended family, especially women who have influence over health decisionmaking.

Conclusion The results of this study provide several implications for the development of interventions that aim to inform ethnically diverse Black women about the HPV infection and vaccination. This is of considerable importance particularly given the low 3-dose vaccination completion rates among Black women and low income adolescents [6]. While there are similarities among Black females in terms of their need for greater education on HPV infection and vaccination, there are cultural differences in knowledge, attitudes, and beliefs that should be addressed in educational interventions. In this study, Black immigrant women expressed lower levels knowledge about HPV infection and vaccination compared to African American women. Clinicians who provide care for immigrant and minority groups are in

123

a unique position to ensure that women are able to make an informed decision about HPV vaccination by providing adequate information about HPV infection transmission, risk, and prevention as well as the HPV vaccine, its safety, and vaccination guidelines. Interventions should particularly focus on the various facilitators, barriers, cultural and beliefs specific to each ethnic group. In addition to identifying similarities and differences among ethnic groups, an important culturally-based strategy found in this study is the need to include Black women of all ages in HPV education because of the roles they have in extended families. The implementation of cultural competency training for health care providers along with the development of culturally and linguistically appropriate education programs are also important considerations. In addition, data are needed on HPV infection and vaccination rates among Black women by ethnicity, length of US residency, and socioeconomic status. Further research is needed to examine disparities in HPV vaccination among Black subpopulations as well as interventions to combat HPVrelated cancers. Acknowledgments Funding was provided by New Jersey Health Foundation, Inc., an affiliate of the Foundation of UMDNJ. Appreciation is expressed to the women who participated in our focus groups and shared their experiences with us. We also express our thanks to the staff of the Newark Community Health Centers, Inc., specifically Ms. Edith Eze, Coordinator of Women’s Health Services. We would also like to thank Richard Warren, a student intern, for his assistance with manuscript preparation.

References 1. US Cancer Statistics Working Group: United states cancer statistics: 1999–2007 incidence and mortality web-based report. 2010 [cited February 3, 2011]; Available from: www.cdc.gov/uscs. 2. American Cancer Society: Cervical cancer. 2011 [cited August 17, 2011]; Available from: http://www.cancer.org/Cancer/Cervical Cancer/DetailedGuide/cervical-cancer-risk-factors. 3. Food and Drug Administration (FDA): Gardasil. 2011 [cited May 15, 2011]; Available from: http://www.fda.gov/BiologicsBlood Vaccines/Vaccines/ApprovedProducts/UCM094042. 4. Food and Drug Administration (FDA): Cervarix. 2011 [cited May 15, 2011]; Available from: http://www.fda.gov/BiologicsBlood Vaccines/Vaccines/ApprovedProducts/ucm186957.htm. 5. Advisory Committee on Immunization Practices (ACIP): Recommendations on the use of quadrivalent human papillomavirus vaccine in males. MMWR Morb Mortal Wkly Rep. 2011; 60:1705–8. 6. Centers for Disease Control and Prevention: National and state vaccination coverage among adolescents aged 13 through 17 years—united states, 2010. MMWR—Morbidity Mortality Weekly Report 2011;60:1117–23. 7. Hughes J, Cates JR, Liddon N, et al. Disparities in how parents are learning about the human papillomavirus vaccine. Cancer Epidemiol Biomarkers Prev. 2009;18(2):363–72. 8. Kobetz E, Dunn Mendoza A, Menard J, et al. One size does not fit all: differences in hpv knowledge between haitian and african american women. Cancer Epidemiol Biomark Prev. 2010;19(2): 366–70.

Author's personal copy J Immigrant Minority Health 9. Marlow LAV, Wardle J, Forster AS, Waller J. Ethnic differences in human papillomavirus awareness and vaccine acceptability. J Epidemiol Commun Health. 2009;63(12):1010–5. 10. Cates JR, Brewer NT, Fazekas KI, Mitchell CE, Smith JS. Racial differences in hpv knowledge, hpv vaccine acceptability, and related beliefs among rural, southern women. J Rural Health. 2009;25(1):93–7. 11. Ragin CC, Edwards RP, Jones J, et al. Knowledge about human papillomavirus and the hpv vaccine—a survey of the general population. Infect Agents Cancer. 2009;4(Suppl 1):S10. 12. Perkins RB, Pierre-Joseph N, Marquez C, Iloka S, Clark JA. Parents’ opinions of mandatory human papillomavirus vaccination: does ethnicity matter? Womens Health Issues. 2010;20(6): 420–6. 13. Slomovitz B, Sun C, Frumovitz M, et al. Are women ready for the hpv vaccine? Gynecol Oncol. 2006;103(1):151–4. 14. Watts LA, Joseph N, Wallace M, et al. Hpv vaccine: a comparison of attitudes and behavioral perspectives between latino and non-latino women. Gynecol Oncol. 2009;112(3):577–82. 15. Davis K, Dickman ED, Ferris D, Dias JK. Human papillomavirus vaccine acceptability among parents of 10- to 15-year-old adolescents. J Low Genit Tract Dis. 2004;8(3):188–94. 16. Lechuga J, Swain GR, Weinhardt LS. The cross-cultural variation of predictors of human papillomavirus vaccination intentions. J Womens Health (Larchmt). 2011;20(2):225–30. 17. Olshen E, Woods E, Austin S, Luskin M, Bauchner H. Parental acceptance of the human papillomavirus vaccine. J Adolesc Health. 2005;37(3):248–51. 18. Read DS, Joseph MA, Polishchuk V, Suss AL. Attitudes and perceptions of the hpv vaccine in caribbean and african-american adolescent girls and their parents. J Pediatr Adolesc Gynecol. 2010;23(4):242–5. 19. Scarinci IC, Garce´s-Palacio IC, Partridge EE. An examination of acceptability of hpv vaccination among African American women and Latina immigrants. J Women’s Health. 2007;16(8):1224–33. 20. US Census Bureau: American community survey (2007–2009): Table c04006 people reporting ancestry [data file]. 2011 [cited August 16, 2011]; Available from: http://factfinder.census.gov/ servlet/DTTable?_bm=y&-ds_name=ACS_2009_3YR_G00_&_geoSkip=0&-mt_name=ACS_2009_3YR_G2000_B04006&redoLog=false&-_skip=0&-geo_id=01000US&-_showChild=Y& -_lang=en&-_toggle=ACS_2009_3YR_G2000_B04006.

21. Agyemang C, Bhopal R, Bruijnzeels M. Negro, black, black african, african caribbean, african american or what? Labelling african origin populations in the health arena in the 21st century. J Epidemiol Commun Health. 2005;59(12):1014–8. 22. Becker MH. The health belief model and personal health behavior. Health Education Monographs. 1974;2:324–473. 23. Painter JE, Borba CP, Hynes M, Mays D, Glanz K. The use of theory in health behavior research from 2000 to 2005: a systematic review. Ann Behav Med. 2008;35(3):358–62. 24. Brewer NT, Fazekas KI. Predictors of hpv vaccine acceptability: a theory-informed, systematic review. Prev Med. 2007;45(2–3): 107–14. 25. Marlow LA, Waller J, Evans RE, Wardle J. Predictors of interest in hpv vaccination: a study of British adolescents. Vaccine. 2009;27(18):2483–8. 26. Reynolds D, O’Connell KA. Testing a model for parental acceptance of human papillomavirus vaccine in 9- to 18-year-old girls: a theory-guided study. J Pediatr Nurs. 2011;27(6):614–25. 27. Reiter PL, Brewer NT, Gottlieb SL, McRee AL, Smith JS. Parents’ health beliefs and hpv vaccination of their adolescent daughters. Soc Sci Med. 2009;69(3):475–80. 28. Lim JW, Gonzalez P, Wang-Letzkus MF, Ashing-Giwa KT. Understanding the cultural health belief model influencing health behaviors and health-related quality of life between Latina and Asian-American breast cancer survivors. Support Care Cancer. 2009;17(9):1137–47. 29. Krueger RA, Casey MA. Focus groups: a practical guide for applied research. 3rd ed. Thousand Oaks, CA: Sage Publications; 2000. xvi, 215 p. 30. Brown D, Cochran D. Multiple social roles and multiple stressors for black women: In: Brown D, Keith V, editors. In and out of our right minds: the mental health of african american women. New York: Columbia University Press; 2003: p. xv, 301 p. 31. Francis SA, Battle-Fisher M, Liverpool J, et al. A qualitative analysis of south african women’s knowledge, attitudes, and beliefs about hpv and cervical cancer prevention, vaccine awareness and acceptance, and maternal-child communication about sexual health. Vaccine. 2011;29(47):8760–5. 32. Gamble HL, Klosky JL, Parra GR, Randolph ME. Factors influencing familial decision-making regarding human papillomavirus vaccination. J Pediatr Psychol. 2010;35(7):704–15.

123