Dangerous Agent or Saviour? HPV Vaccine Representations on Online Discussion Forums in Romania
Marcela A. Penţa & Adriana Băban
Published online: 21 September 2013 # International Society of Behavioral Medicine 2013
Abstract Purpose Whereas Romanian health officials have launched two national human papillomavirus (HPV) vaccination campaigns, the uptake rate remained insignificant. Understanding local perceptions of the vaccine is necessary, as they could inform future educational programmes. Given that social media provide new opportunities to communicate about vaccination, this paper sought to explore the public’s constructions of the HPV vaccine as they were expressed on Internet discussion forums. Methods Twenty discussion forums, with a total sample size of 2,240 comments (2007–2012), were included. We conducted a thematic analysis with a focus on language, informed by a discourse analytic approach. Results Positive discourses relying on evidence-based arguments or cancer-related experiences battled with negative discourses that focused mostly on pseudo-scientific information and affect-based testimonials. Both camps made use of appeals to authority in order to provide powerful messages. Critics expressed high levels of mistrust in the health system and perceived the vaccine as dangerous, as part of a conspiracy, as unnecessary or as a promoter of promiscuity. By contrast, supporters considered the HPV vaccine tobehelpful andcriticizedtheirrationalityofopponents.Ambivalenceand uncertainty also emerged, along with criticism toward the suboptimal organization of the vaccination programmes. Findings highlight ways in which views about the vaccine are embedded in broader perspectives about science, the national medical system, society development and economic inequality. Conclusion Online posts are likely to elicit fear and doubts around vaccination, which in turn may impair decisions.
Findings indicatethattargeted education campaigns are needed in order to address public concerns about vaccination.
Keywords Discussionforums .Humanpapillomavirus (HPV)vaccine .Qualitativeanalysis .Romania
Human papillomavirus (HPV) is one of the most common sexuallytransmitted infections inwomen and men worldwide [1, 2]. While the infection is often transient, in some cases it canleadtogenitalwarts,cervicalcancers,otheranogenital cancers and oropharyngeal cancers [4–6]. Romania is particularly known for having the highest cervical cancer incidence and mortality among European countries [7, 8]. Given the seriousness of cervical cancer burden and the lack of a systematic screening program available at a nationallevel[9,10],in2008,theMinistryofHealthlaunched a national school-based vaccination campaign providing free HPV vaccine for 10–11-year-old girls. Nonetheless, due to highparentalrefusalrate,only2.57%ofthetargetgroupwere vaccinated . In 2009, a second vaccination programme targeted 12–14-year-old girls,but was cancelled bythe end of 2010 as unsuccessful. Adult women were also provided with the opportunity to get the vaccine free of charge on-demand through their healthcare providers. Despite these policies, Romania registers one of the lowest uptake rates in the European Union (EU), as the other EU countries that have implemented HPV vaccination programmes reported coverageratesrangingfrom17to84%.Forexample,coverage rates were over 80 % in the United Kingdom, Portugal and Denmark; 50–60 % in Italy and about 30 % in France . Previousresearchhasidentifiedmultiplefactorsinfluencing HPVvaccinationdecisions,includingpersonal(e.g.anticipated regret, child’s age), interpersonal (provider recommendations, social norms), organizational and societal (e.g. policy, cost)
M. A. Penţa:A. Băban (*) Department of Psychology, Babes-Bolyai University, 37 Republicii Street, Cluj-Napoca, CJ 400015, Romania e-mail: [email protected]
Int.J. Behav. Med. (2014) 21:20–28 DOI 10.1007/s12529-013-9340-z
factors . It was also shown that an increasing number of people turn to the Internet to locate HPV vaccine information [14, 15]. Given the expansion of Web 2.0 technology, defined by user participation, openness and network effects [16, 17], discussion forums have also become an important source of vaccine information, as they provide an opportunity to access opinions and to express personal views . In terms of implications, a significant body of research has proposed that vaccine-related information on the Internet might impact knowledge, attitudes, decision making and behaviour [17, 19–21]. For instance, it was found that accessing vaccinecritical websites or blogs enhances the perception of risk of vaccinating and lowers vaccination intentions [19, 20]. Consequently, discussion forums might play an educational role, modelling vaccine-related decisions in a context in which contagion of ideas might take place . Therefore, it is importanttoidentifythetypeofvaccinerepresentationsevoked in the online environment. While previous research investigated the portrayal of the HPV vaccine in news stories, videos, blogs or websites [23–38], to our knowledge, no studies have examined the waytheHPVvaccinehasbeenrepresentedinonlinediscussion forums. This paper aims to explore HPV vaccine-related conversationspostedondiscussionforumsandtoprovidein-depth insight into people’s perspectives, factors that restricted uptake andparticularitiesofcommunicationaboutthevaccine.Itisour belief that investigating public’ views regarding vaccine could inform future vaccine-related education campaigns.
This study was part of a broader project on “Psychosocial, Political and Gendered Dimensions of Preventive Technologies in Bulgaria and Romania: HPV Vaccine Implementation” (2010–2012). Using an inductive (data-driven) approach , we conducted a thematic analysis  with a focus on language, informed by a discourse analytic approach . Specifically, we explored the manner in which the vaccine is constructed within broader socio-economic and cultural context by focusing on the description of vaccinerelated facts, experiences and opinions. For a deeper understanding of the public’s constructions about the vaccine within a communication environment, we were also interested in delineating the dominant strategies of discourse that were employed.
Through Google we identified Romanian discussion forums relating to HPV vaccine. The search terms were “discussion forum”,“HPVvaccine”and“cervicalcancervaccine”.Search yielded 23 discussion forums, of which three were excluded
because they contained less than five user comments. The remaining 20 forums, with a total sample size of 2,240 comments (2007–2012), were included in the study (Table 1). We used the individual comments as the unit of analysis. Unrelated advertisements and messages were eliminated. All posts were read in order to identify recurrent discourse patterns. We focused our analysis on expressions and arguments used to describe the HPV vaccine, on the type of emotions evoked and on interaction and communication strategies. The analysis was conducted in Romanian and then was translated for this paper. The comments were translated into English by the first investigator (MP).
Informed consent of participants was not required because, as Robinson  and Rodham and Gavin  suggested, when the forums are publicly available, it is assumed that users are awarethattheirpostingswillbereadbyothers.Theuniversity ethics committee approved the study.
The demographics of participants are not known, given that publicforumsdonotrequiresuchinformation.However,many commenters identified themselves as parents, adolescent girls, young women, doctors or men. Overall, we identified three categoriesofactiveforumusers:(1)informationseekers—who sought information and were generally undecided with regards to HPV vaccination, (2) vaccine opponents—who produced a negativediscourseand(3)supportersofthevaccine,whowere favourable toward vaccination.
Often, discussions became polarized around anti-vaccination and pro-vaccination camps, with most participants taking a position and defending their cause. Direct user’ interaction was frequent, as often people cited previous commenters and responded specifically. Dialogue did not lead to common conclusions;instead,itoccasionallyledtoheateddebates,sarcastic comments, irony or personal attacks: “you have a diabolic ability to disinform people and I suspect you are either paid to endorse the harmful vaccine or you are a freemason. You should be ashamed” (Demographic information not specified [NS],2008).Emoticonswereconstantlyused,whileanecdotes, images and videos were also employed, especially during the negative discourse.
Int.J. Behav. Med. (2014) 21:20–28 21
Findings are presented in three sections, corresponding to the global types of forum participants and are organized into main themes, accompanied by relevant data extracts.
This category of participants initiated discussions by asking for others’ opinions about the vaccine, and generally had few interventions in later discussions: ”I don ’t know what to do. What do you say about the vaccine? Would you get it?” (Female [F], parent, 2008). They presented themselves as seeking answers and as having little reliable knowledge on the subject. Generally, their messages were undecided, confused, ambivalent, and expressed uncertainty or conflicting views: “Should I believe doctors or rumours?” (F, 2009).
Some participants were clearly against the use of vaccines and modern medicine in general, while others particularly rejected the HPV vaccine. We outline five main themes.
A major category of users stated that they would not accept vaccination, as they considered the HPV vaccine “more dangerous than the disease itself” (NS, 2010). They expressed concern over side effects, claiming that vaccination was associated with mortality and serious morbidity worldwide. Some commentersdescribedthevaccineas“poisonous”andwarned against its use. Participants made use of drama and vivid narratives in order to motivate their position. The following quotes are illustrative: “Have you seen the recent case in England concerning the girl who died only a few hours postvaccination? Everyone knew the girl full of energy until after autopsy when they said that—supposedly—she was terribly ill. She was only 14 years old” (F, 2009) or “Boys have no escape either. One little boy from New Jersey died eight days after being vaccinated” (NS, 2010).Some went from expressing their opinion, to vigorously trying to persuade others to reject the vaccine and presented dreadful consequences of immunization: “Donot vaccinateyourdaughters ORyou will risk their lives! A lot of vaccinated girls died or became paralysed or they ended up so ill they need to take tons of medicines for the rest of their lives.” (NS, 2009). “This vaccineisextremelydangerous![…]Couldyoulivewiththeguilt
Link of the discussion forum Number of comments
1 http://forum.hotnews.ro/index.php?showtopic=2349 195 2009–2012 2 http://forum.realitatea.net/showthread.php?t=32009 37 2008–2009 3 http://raspunsuri.rol.ro/art/3131-73-de_ce_trebuie_vaccinate_fetitele_impotriva_cancerului_uterin.htm 6 2008 4 http://www.121.ro/forum/sanatate-f19/vaccinul-impotriva-hpv-t13724.html 30 2008–2009 5 http://www.copilul.ro/forum/cafeneaua-mamicilor/bun-sau-rau/vaccin-anti-hpv-29745.html 8 2010 6
http://www.utilecopii.ro/forum/index.php?showtopic=10742 6 2009 7 http://www.kudika.ro/comunitate/forum/view_topic/44612/Vaccinul-HPV.html 10 2010 8 http://forum.softpedia.com/topic/246374-hpv-o-necunoscuta/ 205 2007–2010 9 http://forum.anticonceptionale.ro/t13138-vaccinul-anti-HPV.html# 30 2008 10 http://forum.anticonceptionale.ro/t21186-vaccin-anti-HPV–pro-sau-contra-.html 63 2008–2010 11 http://www.roportal.ro/discutii/topic/9699-hpv/page__st__10 47 2007–2010 12 http://www.miresici.ro/forum/showthread.php?t=15175 307 2008–2012 13 http://www.kudika.ro/comunitate/forum/view_topic/34525/vaccin-impotriva-cancerului-de-col-uterin.html 30 2008 14 http://forum.7p.ro/Despre-vaccinuri-si-reactiile-la-ele.aspx?g=posts&t=342&p=30 60 2011 15 http://forum.softpedia.com/topic/466922-socant/ 944 2008–2009 16 http://www.craiovaforum.ro/cafenea/vaccinarea-fetelor-de-9-12-ani-cu-vaccinul-anti-hpv-gardasil-silguard-267529.html 15 2008 17 http://www.copilul.ro/forum/copii-prescolari-si-scolari/sanatate-si-siguranta/vaccinul-anti-hpv-pentru-fetite-8639.html 9 2008 –2009 18 http://www.miresici.ro/forum/showthread.php?t=5317 116 2007–2009 19 http://www.idieta.ro/forums/pentru-ca-vrei-sa-arati-cat-mai-bine/sanatate/cancerul-la-femei/26707-mamepentru-fiica-mea-3.html 115 2009–2010 20 http://www.timisoaramami.ro/index.php?page=forum&op=viewThread&id=428&title=Vaccin+HPV 7 2008
22 Int.J. Behav. Med. (2014) 21:20–28
of causing permanent harm to your child? What if your own child becomes paralyzed?” (Male [M], parent, 2008). Erroneousinterpretationofofficialreportsandmisinforming statements were also encountered, such as the following excerpt: “This vaccine was banned in America, Canada and Austria because it has caused 25 deaths!!” (M, 2008). Antivaccine users presented vaccines as unnatural: “vaccines’ cumulative effect is like a bomb, with every vaccine you interfere with nature, it’s a step further for serious diseases and death” (M, 2009). Some participants tried to empower decision-makers to say “no” to HPV vaccine and even attached samples of refusal forms that parents were encouraged to download and use. Some discussants reacted strongly at those who accepted vaccination and their responses seemed to have been designed toelicitanxiety,regretanddoubtsovertheappropriatenessofthe decision: “Oh dear, God help you for having vaccinated your daughter!Youmighthavedonemoreharmthangood.Now,like a responsible father as you are, you should monitor her for rheumatoid arthritis, multiple sclerosis, chronic fatigue, central nervous system syndromes and for cervical cancer itself!” (NS, 2009). The policy regarding parental consent was raised as an argumentinordertopromotetheideathatthevaccineisrisky: “If there are nodangers, then why dothey ask for our consent in writing?” (F, parent, 2008). Another concern that amplified the vaccine’s dangerousness arose from what was perceived to be insufficient testing and lack of long-term vaccine data: “… too many unknown facts. Neither one of the vaccines has been tested enough…even producers have no idea about its effects. The brochure is full of statements such as <It’s not known or it has not been investigated>…” (F, 2009). Vaccination risks are seen as unacceptably high: “The whole story goes down to a vaccine that may permanently harm you versus a disease that you might contract or not. I’d rather play the lottery instead” (M, parent, 2008). Some recommended delaying the decision: “It’s better to wait a few more years and see…” (F, 2008), while mothers of 3–4-year-old girls wrote about being relieved that they do not have to make a decision at the present moment. References to other parents’ attitudes or practices were frequent and were used to support the perception of risk: “In my son’s class, all parents refused vaccination” (F, parent, 2008). Medical authorities’ points of view were commonly cited: “I wanted to do the vaccine, but my doctor encouraged me to avoid vaccination” (F, 2011). “I talked to doctors and professors and ABSOLUTELY ALL of them said that they wouldn’t vaccinate” (NS, 2008). Further examples were given: “The President of the Romanian Association for Epidemiology said he wouldn’t vaccinate his daughter […] the Alliance for Antidiscrimination of
dads, T.A.T.A. asks the Ministry to stop the vaccination campaign!” (NS, 2009). Someone expressed his opinion by explicitly pointing out his medicalprofessionandposition: “Iamadoctor.I honestly tellyouthatIacknowledgetheimportanceofcertainvaccines, such as polio. However, I categorically refused HPV vaccine becauseitslong-termsideeffectsarenotknown;itproduces4 times more deaths compared to any other vaccine, during the US vaccination campaign Gardasil caused 28 deaths in 2008; FDA reported 6723 adverse effects, there are several videos on the Internet with victims who suffered severe damages” (M, doctor, 2010).
A subcategory of people postulated that the vaccine is promoted with the hidden intention to exterminate part of the population: “Some guys out there consider we are too many on this earth!…They want us dead.” (NS, 2009). They frequently mentioned words such as “genocide”, “Masonic vaccine”, “experiment”, “sterilizing vaccine” and they considered vaccination as“the biggest crime against humanity”. Some felt the vaccine was offered for free so that they can use Romanian girls as guinea pigs: “Run like hell from free vaccines. They just want to experiment them on us. Even Diane Harper1 stated that vaccination at such a scale is a public experiment” (F, 2008). They raised accusations of genocide, claiming that the vaccine might cause abortion and sterilization, as illustrated by the following excerpt: “This vaccine “helps” girls so that they will not be able to have children. It’s unknown whether vaccinated girls will give birth to healthy babies or to monsters. Ministry of health has become the Ministry of sterilization” (M, 2008). One user even presented pharma as having been connected to Hitler: “Do you know who are the pharma companies? Hitler and Bormann invested in Merck and other companies because they knew it will be a source of money and a way to exterminate the population” (NS, 2009). Romania’s position is frequently compared to Western countries and is described in a negative light: “We have become the guinea pigs for the entire world! Have there been such vaccinations in other countries? Every nation makes fun of us. They [US and European countries] refused the vaccine, that’s why they sent it here” (F, 2008).
1 Dr. Diane M. Harper is a researcher who worked on the safety and efficacy trials for the HPV vaccines.
Int.J. Behav. Med. (2014) 21:20–28 23
Lack of Trust and Discontent with the National Health System
Thetrustworthinessofpharmaceuticalcompanies,Government and doctors is strongly contested, as they are considered to be “perverted by money temptations”. The vaccine was seen as a questionable business, instead of a protective agent. Most participants used irony and sarcasm to express their views:“The Health Minister was so preoccupied with our best interest, the money they’ve received had nothing to do with them pushing the vaccine. […]From so much kindness and genuine concern for Romanians, Madame Albright, a former US State secretary (who till recently didn’t even know Romania’s location on the map) pressured to promote the vaccine.” (M, 2008) and “I’m deeply touched by pharmaceutical companies concern for Romanian people!” (NS, 2008). The fact that the vaccine was providedatnocostwasseenasastrategytofulfiltheir agenda. Someparticipantswentonexplainingtheirviewsaboutthe real reasons underneath pharmacological industry’s actions: “…Who doesn’t rememberthe H5n1scare?Someone madea huge profit then… Big pharma release “wonder-anti cancer products” to make profits. They are only interested to selland are like a snake that would go through any lengths to manipulate the public. They created a “scary” campaign to make mothersafraidandmakethembuythevaccine.Theycomeup with statistics about cervical cancer deaths only to convince youthatifyoudonotvaccinateyouhaveallthechancestoget a<terrible disease>” (NS, 2010). “Cancer produces money! They play with your perceptions and fears. They know your reactions. Thing is that these are doubtful vaccines that they stick on our throat…HPV vaccine is nothing but a big scam” (M, 2009). EventhecredibilityandauthenticityoftheNobelPrizewas contested by some: “The Nobel prize has nothing to do with fairness. Several investigations are currently in place regardingthemoneypaidbyAstraZenecaandGSKtothecorrupted scientific committee” (NS, 2009). Many commenters feared that institutions suppress information about vaccine risks: “who guarantees us that the data fromthestudiesarenotfalsifiedaswasthecasewithprevious vaccines??” (F, 2009). Other users reinforced the idea of lack of transparency: “When asked for additional data, SanofiPasteur MSD Germany replied: <We do not have this data, and we will not get it, either>. If the data were accurate, why didn’t they make them public? ” (NS, 2009). They also made jokes in order to highlight their perspective: “tell me who funds the study and I’ll tell you what the conclusions are.” (NS, 2009). Dissatisfaction with the national health system was encountered, as some participants stated: “I find suspicious the rush with which the vaccine was launched in a country where the health system does nothing for people. Most hospitals are
onthevergeofcollapsingandtheyspendmoneyonavaccine that just might be efficient” (NS, 2008). The rush that characterized the programme seems to negatively affect decisions: “I refused the vaccine. I was asked to make a quick decision, I was afraid and I did not want to take any risks” (F, parent, 2009). The introduction of the educationalwebsiteandtheavailabilityofspecialistsbeingreadyto answerpeople’s questionswerewelcomed:“I’veseenthatthe Ministry of health changed tactics. Well done. Now they plan to inform us before they ask for our decision” (F, parent, 2009). However, people were dissatisfied with the way this education campaign was done: “What’s with this helpline launched by the Ministry? They should provide answers, but their responses seem to be rigid, and they often dismiss you saying that your question is not related to the vaccine” (F, parent, 2009). “The school doctor did not answer my questions. She ironically said <vaccine can’t be worse than cancer> and stated that they give us free vaccines and we refuse” (F, parent, 2008).
Discoursesofmoralityemergedandanotableconcernrefersto the vaccine as promoting promiscuity in girls, as is illustrated by the following excerpts: “The Ministry of Sin sends the messagethatbygettingvaccinatedgirls cansinas longas they want.<DoIvaccinatemydaughterandgiveheragreenlightto promiscuity or do I educate her to be only with her husband?>….Why should a child, a 4th-grade school girl, become a prostitute ? “ (F, parent, 2009). “This vaccine increases libido in girls…10 year old girls will understand that they can have sex without a condom and soon they’ll change partners like they change socks” (M, 2008). Some forums included pictures taken from the American media, containing messages such as this: “Get your sex vaccine here!” (M, 2007).
The vaccine was presented as unnecessary on grounds of various reasons. Some underestimate the prevalence of HPV-related diseases: “HPV is mostly found in the US. In Romania it is much rarer […]. No one needs the vaccine. I’ve recentlyheardthatinRomania5womendieofcervicalcancer everyday.PersonallyI’veneverheardaboutthisdisease.Ibet your statistics are fake, in my whole life I’ve never heard about any woman dying of cervical cancer in my town … I’veevenheard the stupiditythatboysSHOULDbevaccinated too” (M, 2008). Furthermore, cervical cancer is presented by some as a disease affecting mostly a certain category of women:“AsfarasIknow,onlyprostitutesareatrisk.Women
will not get cervical cancer if they will make love (not sex) with one partner only…. Parents who educate their girls can relax and can sign the refusal form” (M, 2008). CriticscontestHPVvaccinebenefitsandproposealternative solutions: “There is a natural medicine, Cervugid, that cures HPV (F, 2009)”. Many people endorse personal protective methods, such as screening, sexual education, homeopathic medicine,dietorbeliefinGod,claimingthat:“Epidemicshave passed without vaccines. There are many studies on diets that can help eliminate the virus, but it’s too bad that nobody promotes them. Of course, it would be too cheap and natural. Andtherewouldbenoneedofthevaccine.Ourancestorswere well-known for their vitality and they treated themselves with natural plants only…” (F, 2009). “I improved my health with the help of traditional medicine. With the risk of being labelled mystic, I put all my trust in oriental traditional medicine, particularly Chinese and Indian—ayurveda. […]The doctors who stood against Gardasilwereintimidatedanddiscredited.Youshouldhave more trust in God than in vaccines, scientifically packed lies of the health system and pharmaceutical companies” (NS, 2009). Finally, some do not see the point of using prophylactic vaccines,astheybelieveinlackofcontrolanddestiny:“We can’tfightfate.Soonerorlater,we’lldieanyway.Ifitwon’t be from cancer, it will be from a brick that lands in our head” (F, 2009). Overall, vaccine opponents took the role of informationproviders, writing elaborate messages aiming to “educate” othersaboutvaccinedangerousness.Theyexpressedassertions and presented them as truths, while being categorical in rejecting other opinions: “My dears, I’ve noticed that my messages have irritated you. Stop believing that you could makemeshutupormakemeacceptyouropinion”(NS,2009). They seemed to have gained a few converts, as shown by the following post: “I took the first vaccine shot! But, after what I’ve read here, I’m not going to continue with the vaccination scheme!… I’m impressed by your knowledge” (F, 2008).
Most people who have had personal experiences with HPVor cervical cancer described it as a helpful discovery and as a “life-saver”. Their arguments were mostly case-based, highlighting that their past experiences influenced current discourses. They presented powerful first-person accounts, heldhopeinthevaccineandregrettedthatitwasn’tintroduced earlier: “Personally, I’ve had only one sexual partner in my
life. I was a good girl and I’ve waited for the right man for 20 years. I always took care of my health and look what happened to me… I have a high-risk HPV strain and had two resections of the cervix uteri. If I’d had the possibility to get the vaccine,I would have done it” (F, 2008). Such stories, while not very common, are likely to confront stereotypes regarding the “typical” woman who gets cervical cancerrelated diseases. Concerns about insufficient information or about financial interests paled in comparison to the severity of cancer: “I’ve readall theposts,including manyaberrations …bothmywife and my aunt died of cancer. I am upset to see how you talk. I understandmuchbetterthanmostofyouhowitistolosehair, to have continuous nausea and to have your genitals and breasts removed. Of course I accepted the vaccine for my daughter” (M, parent, 2009). Vaccine entailed risks are also minimized:“My decision coincided with my daughter’s. As young as she is, she is mature enough to understand what is good for her. Not all girlsarelikethat,becausenotallofthemhelplesslyhadtosee their mother dying of cancer. My daughter decided to get vaccinated and take small risks in order to prevent the big ones” (M, parent, 2009).
Science-oriented people endorse vaccination and evidencebased medicine in general. According to them, HPV vaccination is safe, efficient, important and is described as “the normal thing to do”. Thiscategoryofusersprovidedinformationbyelaborating comprehensive posts that generally came as a response to the anti-vaccine lobby. They criticized rumours, “cheap philosophy” and the mentality of “those irrational” people who opposed the vaccine relying on flawed or unscientific information.“Fightagainstobscurantismandprimitivism”(M,2008), as they called it, was a recurrent theme. They were critical, sometimes sharp and polemical and took an educative role: “Dearmadame,youhavenocure!Yourecommendablogthat pertains to extremist religious organization that militates against the use of vaccines and claims that we shouldn’t fight disease because only God decides in terms of life and death. I respect religion but I don’t like it when it tries to substitute against other forms of knowledge such as science or arts. Maybe you did not know, but today, diseases such as polio havebeeneradicatedpreciselywiththehelpofvaccines.With regards to HPV vaccine, the list of potential side effects is known: dizziness, redness, faintness. None of them affects children’shealth.It ‘snotmewhosaysthat,buttheinstitutions who monitor vaccines. So what do we have here? Youtube versus FDA” (M, 2009). They described medicine and vaccines’ contribution to disease prevention and focused on statistics, objective
Int.J. Behav. Med. (2014) 21:20–28 25
argumentsandappealstoofficialsources.Theyalsoarguethat it is illogical to claim the vaccine is inefficient because it is being promoted by manufacturers: “Wow, it’s incredible how much effort someone invests only to convince us that the vaccine is bad simply because it’s endorsed by the producers! […] This is why there are international organizations that monitor vaccinations. EMEA, FDA, CDC, WHO—all these organizations who represent the voice of science recommend the HPV vaccine” (M, 2009). Although they acknowledge the limits of the medical system,theyholdtrustinmedicine:“noonedeniesthatthehealth system has some drawbacks, but this does not mean that modern medicine is flawed” (NS, 2008). They focused on biomedical evidence to correct misconceptions: “My friend, you present isolated cases. You do not understand the scientific method in medicine. I provide a scientifically-based perspective, while you come up with pseudo-scientific information such as references to Masaru Emoto” (NS, 2009). Emotions such as frustration seemed to be elicited by antivaccination messages, as it is illustrated by the following quote: “I’m stunned that in the XXI century there are such attitudes…I am sorry for those children who have such ignorantparents”(M,2009).Asaresponsetothedisseminationof conspiracy theories, opponents were ridiculed for being irrational: “Vaccines must have been created by aliens who want togetridofpeople”or“ofcourse,becauseIamaresearcher,I must be involved in some gigantic conspiracy meant to exterminatethe world” (NS,2008) and “Dearmysticman,[…] Ifit was up to you, we should go and live in caves like Amerindians when, in the pre-Columbian age life expectancy was about 25–35 years. Their medicine must have been very effective!” (M, 2009). Finally, participants expressed concern about the negative effects of the anti-vaccine lobby: “You might not realize that, but by spreading your ideas you might actually harm many innocent people.” (M, 2009).
With the growth of Internet usage, vertical expert–consumer communication about vaccines is being corroborated with horizontalinformationseekingandprovision.Thevirtual environment has become a common source of information [14,15]andprovidesnewpossibilitiesofinteractiveexchange among users. Implications are important, as previous studies have found that online information influence vaccination decisions [19–21, 45]. Given that discussion forums provide a valuable site to investigate people’s understandings of an issue [18, 46], this study aimed to examine the way that people discussed HPV vaccination in the context of Romanian online forums, reflecting both their vision and their communication
strategies. We believe that if officials were up to date with regards to the vaccine representations among the public, they would be in a better position to elaborate targeted educational programmes. Our results indicated that HPV vaccination brought forth broader perspectives about science, medicine, morality and society development. Positive discourses around vaccination relying on evidence-based arguments or life experience with HPV-related diseases battled with negative discourses that focused mainly on pseudo-scientific evidence, erroneous interpretation of medical reports and rejection of epidemiological information. In short, vaccine opponents described HPV vaccine as dangerous, disseminated conspiracy theories, considered that health system, pharmacologic companies and politicians areuntrustworthy,raisedmoral concernsregarding promiscuity and made efforts to convince others that the vaccine was unnecessary. On the other hand, supporters considered the vaccine as helpful, warning that anti-vaccine messages might have deleterious effects on people’s decisions. Appeals to authority were frequently made. Whereas science-oriented discourses made reference to official institutions, critics mostly cited individual researchers, health professionalsandparentswhorejectedthevaccine.Acceptingthe argument that some experts and most parents refuse vaccination, might make some information-seekers less inclined to accept vaccination, especially since Romanian mothers trust other parents’ opinions . Anti-vaccine activists also made references to pseudo-scientific authors, newspapers, religious associations and anti-vaccination blogs and videos. We might assume that, whereas highly educated people will probably dismiss these sources as non-scientific, some users might see these messages as convincing, given that they seem welldocumented and might give the impression of being reliable. In terms of specific communication techniques, scienceoriented people made use of evidence-based data and statistics. In contrast, opponents and supporters with a personal or familial experience with HPVor cancer made use of affective strategies, such as emotion-charged words, overwhelming testimonialsandrhetoricalquestions.Forexample,opponents presented salient cases of girls experiencing dreadful postvaccination consequences and sent “Don’t do it, or you will regretit!”warnings.Therefore,oneessentialstrategyseemsto be the elicitation of emotions such as anxiety, regret and blame. These findings should be interpreted in light of research that has documented the role of emotion in decisionmaking [48–50] and particularly, the role of anticipated regret in immunization decisions [51, 52], as well as the superiority of narratives over statistics in raising risk perception . Decision-makers were basically told that by vaccinating they might severely damage their child or they might provide protection against a potential disease. Their subsequent decisions might beconsideredbymakingreference tothe concept of “omission bias”, which suggests that harm arising from
26 Int.J. Behav. Med. (2014) 21:20–28
action is less acceptable than harm resulting from inaction [54–57]. Therefore, if vaccination is presented as risky, some parents might be more inclined to refuse it. Whereas our findings regarding safety concerns, conspiracy ideas, alternative medicine or distrust in pharmacological companies are in line with general anti-vaccine messages e.g. [18, 58–61], the discussion regarding moral concerns about sexuality and promiscuity might be more specific to the HPV vaccine . In addition, discontent with Romanian health system and the ineffective organization of vaccination campaign were salient issues. In particular, the speedy launch of the HPV vaccination programme, the lack of a preceding information campaign and the unsatisfactory communication with the public led to missed vaccination opportunities. In this context, the fact that the vaccine was provided free of charge amplified suspicion. Nonetheless, doctor’s advice and education programmes appear to be perceived as important, as long as they are done in a respectful and well-organized manner. Taken together, these results are consistent with our previous face-to-face research that investigated Romanian parents’ reasonsforvaccinerefusal,confirmingthatonlineforums are a reliable resource of data. This study expands prior findings, by uncovering not only the negative attitudes, but also the positive discourse around the vaccine, therefore providing a more balanced picture of vaccine representations. Furthermore, given the interactive nature of the environment, the main communication strategies employed were also identified.Othernotablestrengthsofthestudyarethelargesample size and the anonymity of participants who did not interact face-to-face, which islikelytohaveencouragedexpressionof genuine opinions and greater disclosure of personal experiences [42,62].Ifweacceptthatreadinghigh-riskinformation lowersvaccinationintentionandthatnegativeinformationhas a higher impact on risk perception than positive information , we expect that information posted on discussion forums might lower vaccination intentions. In conclusion, these findings could be viewed as making a calltoaction.Whilesomeanti-vaccinebeliefsmightbedifficult tochange,ahigh number of internet users expressedtheir need for more information. Educational interventions are therefore necessary if we aim to help people make well-informed decisions. The elaboration of high-quality Internet-based decision aids for vaccination decisions might be useful .
Acknowledgments We are grateful to Dr. Irina Todorova for her helpful comments on the manuscript. This study was supported by the National Council for Eurasian and East European Research (NCEEER). The funding source had no role in the design, data collection, analysis and interpretation, writing of the paper or decision to publish.
Conflict of Interest Statement Authors Marcela Penţa and Adriana Băban declare that they have no conflict of interest.
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