Sample
Thirty mothers were recruited (See Table 1). They were ages 36-58 years. Nineteen identified as White, 10 as Black or African American, and 1 as Pacific Islander. Mothers had between 1 and 5 children, with half having 2 children. Forty-seven percent (n = 37) of children were females and 53% (n = 42) males.
Table 1. Demographics N(30) (%)
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Age
|
|
29-39
|
2 (6.67%)
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40-49
|
18 (60.00%)
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50-59
|
10 (33.33%)
|
|
|
Race
|
|
White
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19 (63.33%)
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Black
|
10 (33.33%)
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Pacific Islander
|
1 (3.34%)
|
|
|
Number of Children
|
|
1
|
3 (10.00%)
|
2
|
15 (50.00%)
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3
|
7 (23.33%)
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4-6
|
5 (16.67%)
|
|
|
Sex of Children
|
|
Female
|
37 (46.84%)
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Male
|
42 (53.16%)
|
Media as antecedent to hesitancy
Mothers reported having their children vaccinated by their family pediatrician at what was typically a well-child visit. All but 5 reported hesitancy upon provider recommendation, with 14 specifically mentioning a decision to delay vaccination. For instance: “I was hesitant at first, I hadn’t thought about it yet. (Our) provider gave us the background, but I hadn’t had time to think about it” (Participant 1). Upon initial provider recommendation, all mothers said they had at least heard of the HPV vaccine but recalled negative messages in the media that they had read, seen or heard that contributed to hesitancy or factored into their decision to delay. Online internet exploration via search engines and posts from friends and family on online social media, primarily Facebook, were the primary sources of antecedent exposure. As example: “There wasn’t a lot of research done then (about 4 years ago). He (provider) recommended it that year, and I just wasn’t ready for it yet. Of course, I had gone on the internet and read there were some side effects” (Participant 2). Another mother told of hesitancy from online “stories” on social media: “We waited until 12 or 13. Our kids are really active; I read stories that may or may not be true” (Participant 3). Traditional media (defined as news, magazines and print sources) were mentioned less than online sources but were still recalled at the point of provider recommendation by a few. As one mother explained: “I did have reservations; HPV (vaccine) hasn’t been out that long. You hear the pros and cons. …you always hear the worst case scenario on the news” (Participant 4).
Themes of concerns stemming from antecedent media exposure
Mothers who recalled media messages prior to provider HPV vaccine recommendation revealed three primary themes of hesitancy that stemmed from prior media exposure: safety/side effects, protection/efficacy, and sexual stigma.
Safety/side effects. Mothers’ narratives of hesitancy stemming from media messages about the HPV vaccine were foremost related to misinformation about adverse side effects from HPV vaccination, which they described as being widely communicated (albeit incorrectly), especially on the internet and on social media (e.g. Facebook). As one mother said: “…there were parents I was reading and hearing about, saying that their kids had a reaction to the shot. That was alarming to me” (Participant 2). The harms mothers spoke of reading about on social media and the internet were varied, ranging from paralysis to autism to general, vague claims of fevers, aches and pains. Most mothers stated they recognized that these claims of harm had no scientific basis, yet some still talked about postings from friends on Facebook that told of a child who became paralyzed or who immediately ran a fever and became sick following vaccination. These stories led some mothers to question whether the HPV vaccine may be harmful, especially if a child already has a health condition. Other than paralysis, most mothers dismissed extreme claims from anti-vaccine groups online.
Some mothers also questioned advertisements and commercials on television advocating HPV vaccination because they originated from a pharmaceutical company and “big business”. As a result, these mothers remained quite concerned about adverse effects. For example, “There are so many advertisements you don’t know which ones are beneficial. How long has it been around? What are the long-term effects? What it does? What is it supposed to do? Are there negative contraindications?” (Participant 5). Another mother stated, “What are long-term effects of it? There is too much unknown. Knowledge is power for this. If I knew more about this—not from a pharmaceutical company, then I would be more apt (to get it for child)”(Participant 6). One mother said that commercial advertisements were fear-inducing, making her uneasy about vaccine safety:“The advertisement to me (that I remember) is the one with the kid away from school, has fever and can’t make go away. Whether they (media) are making attention, fear is out there. How safe it is was my main concern. It was definitely new with the oldest” (Participant 7).
Protection/efficacy. As with safety, advertisements and commercials on television were also a source of hesitancy regarding the protective benefits of the vaccine. A couple of mothers spoke of distrust of the pharmaceutical-funded commercials, which resulted in questioning the efficacy of and need for the vaccine. For instance, one mother noted, “It is media promotion. I think I would have been more secure without that promotion. The commercials – they flooded the networks. Honestly, I question it because the commercials are backed by drug companies” (Participant 6). This mother differentiated that commercials are not the same as traditional news media and should not be trusted. Although commercials were the media most often mentioned in regard to distrust, mothers’ attention to negative media claims about the lack of data supporting long-term efficacy of a “relatively new vaccine”, which were gathered from multiple channels, including traditional and social media, had a couple of mothers wondering whether the HPV vaccine protects from any disease. A few mothers had either only read on the internet or on Facebook that the vaccine only protected from a sexually transmitted infection (STI) and were not aware of its cancer protective benefits, especially for males, at the time of recommendation. For instance, I felt it (HPV vaccine)...from what I had read and knew at the time, was more of a protection for others. I feel it is not as much for him as his future spouse or other”(Participant 8).
Sexual stigma. Mothers’ stories of their experience with provider HPV recommendation
also uncovered that exposure to the internet and social media, particularly Facebook, led to concern and fear of sexual stigma related to the vaccine. Some mothers, as a result of what they had seen discussed on Facebook and online discussions, feared that the HPV vaccine was only for young people who were sexually active. As one mother concluded of the lack of necessity of the vaccine for her child, primarily from her online, internet readings:“From what I have read, I think it (the vaccine) is (equated with being) sexually active. I knew my child was not” (Participant 9). Mothers commonly recalled reading and following conversations from family and friends on Facebook that included strong opinion that allowing one’s child to be vaccinated for HPV would be equivalent to accepting and even encouraging the child to be sexually active. As one mother described of her hesitancy derived from online discussions: “Even if you are leaning about wanting to do the right thing (vaccinate), the (sexual) stigma is there (on social media) (Participant 10). Also,“There’s so much you read online. I was probably one of those initial ones who quickly attached it to sexual. And thought that (sex) wasn’t going to come now” (Participant 3). Exposure to these online conversations about sexual outcomes was a source of hesitancy for some mothers because they did not want to attach stigma to their child or to themselves as a “bad” mother for agreeing to HPV vaccination. One mother described it this way: “I just didn’t want this to be like my support of him having to jump out and have sex. I was concerned that is this giving him the green light to say yeah” (Participant 11). A couple of these mothers indicated that online conversations about sexual promiscuity had them questioning why the vaccine was “suddenly” needed now (e.g. they wondered if there was a rise in STIs that would prompt need for the vaccine.)
Decision-making from media exposure: risk benefit ratio and ongoing delay and hesitation
Mothers weighed the uncertainty of the vaccine’s protective effect, safety and sexual stigma gathered from traditional and online/social media sources against provider recommendation and were concerned about the risk of accepting vaccination. One mother described the struggle this way: “You read about many more harms that can happen (by vaccinating) than good. Who doesn’t want to help protect their children? It’s more about fear” (Participant 12). Mothers of sons and daughters were equally likely to delay, with a couple of mothers stating they had concerns with injecting a “foreign substance” without confidence of its protective impact. A couple of these mothers of sons delayed vaccination to discuss with their sons and allowed their sons to decide on vaccination.
Many mothers who delayed wanted to continue research about the vaccine on the internet. Most looked to sources of information such as WebMD and cancer organizations, but others referred more vaguely to online information seeking from unknown sources. Mothers also mentioned continuation of contact and discussions about HPV vaccination with friends on social media, especially Facebook. These mothers both described how they were exposed to the media prior to provider recommendations and also chose to actively use online information sources after recommendations to address anxiety: “I took some time to think about it (HPV vaccination recommendation); I read up on it on my own. I always feel there is some information they don’t have insight to on commercials. I wanted the medical background. I had to come back for another appointment to have them vaccinated” (Participant 13). Also,“Before vaccinating my 14-year-old, I asked providers I worked with as friends. Providers said they absolutely would vaccinate. I also read information online” (Participant 14).
A few mothers who had vaccinated an older child still needed reassurance by seeking information online themselves before vaccinating a younger child. For instance: “I still have reservations about my (younger) daughter. I need to do more follow up online, to look at the stats--- what is the data showing now? Does it make a difference for kids getting the shots? I want the data. My daughter goes to the doctor today. I am going to be pressured again” (Participant 2).
Mothers’ provider recommendations for countering inaccurate media messages
Mothers indicated that what they had heard, read or seen from advertisements/commercials on television, the internet and social media negatively affected their acceptance of their provider’s HPV recommendation. Hesitation often occurred even when mothers stated they had good relationships with and trusted their provider. Based upon their own experiences with hesitancy from negative media messages, mothers most commonly believed providers could do more to counteract negative media messages so that other mothers might be more likely to accept the HPV vaccine recommendation. Less frequently, mothers also recommended the continuation of provider strategies that helped them to overcome their hesitancies and accept vaccination. The strategies mothers recommended pertained to the timing, delivery and content of the HPV vaccine recommendation in the three areas of safety, efficacy/protection and sexual stigma and are discussed next.
First, to counteract inaccurate media messages concerning safety, mothers recommended that providers emphasize the statistics surrounding the safety of the vaccine, including how many people have been vaccinated, the year it became available, the studies that support minimal side effects, and the type of testing the vaccine underwent before recommendation. Mothers suggested that providers be prepared with verbal and written messages, primarily in the form of brochures, to counteract the inaccurate, negative messages about adverse side effects reported in the media, especially those related to autism, paralysis and general, vague side effects that proliferate online. One mother described how her physician’s ability to counteract these negative messages influenced her acceptance and recommended that the strategy continue:“I only did it (accepted vaccination) because I know and trust my physician so much and he could counter the negative messages about side effects I had seen and read” (Participant 12).
To address efficacy and protection concerns from commercials and social media, mothers suggested physicians communicate HPV vaccine efficacy and need by telling how many people acquire HPV, the types of cancers the vaccine protects, reasoning behind the perceived rise in need for the vaccine, and studies of long-term efficacy. Some mothers recommended that providers emphasize that the vaccine provides long-term cancer protective benefits, given online questioning and distrust of HPV vaccine commercials produced by a pharmaceutical company. Mothers also suggested providers use language that emphasizes cancer prevention over the fear messaging that non-vaccination could leave the child vulnerable to cancer, due to their belief that “everything seen on TV seems to cause cancer.” On the other hand, some mothers described how their provider’s communication about supporting vaccination for their own family members helped them overcome their anxieties. As a result, they suggested providers communicate their own experiences with HPV vaccination (e.g., vaccination of children, grandchildren, nieces, nephews) to validate and counteract distrust and skepticism from commercials and online reports. For example, “So, the HPV vaccine, when came up, I did have questions. I had seen on 20/20, Dateline about adverse effects. I was a little more skeptical of HPV than honestly any others because of medical. My question to my pediatrician was,“Did you give to your children?” When she said, yes, I said I am willing to do with my children” (Participant 1).
To combat the stigma associated with the vaccine from misinformation on social media, mothers suggested that providers present the HPV vaccine in one of two framing contexts, either: 1) language that does not address the sexual transmission of HPV or the protection from an STI at all, but only as a protection from cancer or 2) directly, but sensitively, communicating HPV as a sexually transmitted virus alongside an approach that assures your child is not at “fault” but is being protected from a future partner, for which the child has no control over his/her sexual history. Both approaches aimed to de-emphasize or deflect online communication that associates sexual activity with the child.
Because many mothers felt they needed more time to consider the vaccine, they suggested providers should introduce the topic of HPV vaccination as anticipatory guidance, prior to the intended date for which the adolescent is targeted to receive the vaccine. For example: “Often I don’t get info until day of shots. It may not be an easy decision unless they can get that information beforehand. They should have a list of pre-questions to ask and be prepared with questions to come in. They need information more than five minutes before they have to have it” (Participant 15). The most common time frame suggested was one year in advance; others recommended discussion at age 8 or 9.