Focusing on parents needs and saving the lives of children.
I. Introduction to research.
Imagine a world free of diseases. Where measles, mumps, diphtheria, and pertussis were eradicated and the deaths among children younger than the age of five dropped from 25% to below 1%. Through Vickie's Plan our goal is to understand the different reasons that parents are showing resistance to getting their children immunizations and routine vaccinations. By conducting research and communicating with parents in our community we can better educate ourselves of their needs, concerns, and questions on this important matter. The question we are trying to answer is, “What can we do as a medical community?” What can we do to alter our approach and what barriers are we up against? Only then can we improve communication with the public and take a step towards a healthier tomorrow.
II. Statistical information.
Just three years ago the vaccine-preventable disease known as measles claimed the lives of 450 everyday. That is equal to 18 deaths every hour. This disease is still highly contagious in countries such as Africa, Asia, and Europe. What is more concerning is that children are the most susceptible host to vaccine-preventable diseases, leading to 2 million or approximately
25 % of all deaths among children younger than the age of five (Cochi, 2011). Vaccination of children has led to a massive drop in the incidence of common childhood diseases in the developed world. We must continue to vaccinate in order to keep outbreaks from occurring. In Figure 1 we see a comparison of diseases still occurring in the world (orange bars) and diseases occurring in the United States (green bars) (Murphy, 2012).
Bordetella pertussis, also known as pertussis, is the most common vaccine-preventable disease among children younger than the age of 5 years in the United States. Pertussis is highly contagious and easily spread. This disease affects the respiratory tract and if untreated will cause encephalitis of the brain. The number of cases in the United States increased around the year 2005 and began to drop after a rise in vaccinations. Unfortunately, this disease is known to come in cycles and it is not known when each future cycle will occur. In 2010, we saw another cycle of pertussis. This most recent cycle hit the population harder and increased the number of cases past the 2005 cycle. Figure 2 and Figure 3 show the cycle of pertussis over the years and effects on cases in the United States (Murphy, 2012).
There is a belief in Herd Immunity that many scientists and researchers believe very strongly in. Herd Immunity is based on the knowledge that vaccine effectiveness depends on the percent of the population who receive the vaccine, and the percentage of the population still within the protected population who did not receive the vaccine. In other words, at what point does the number of people not getting vaccinated and the number of people dying cause a public awareness? There is a mathematical point, usually around 90% of the population, that you can generally stop the spread of the disease within a population. What Herd Immunity does is form a barrier against the spread of the disease. If 90% of a population is vaccinated then they forma protective barrier for those who are not vaccinated, decreasing the chance of an outbreak (Murphy, 2012). Parents play with these percentages to decide whether or not to get children vaccinated. This in turn causes the number of vaccinations to decrease and the chance of another outbreak rises. As a result Herd Immunity will no longer exist.
III. Acknowledging the problem.
Many people in North America are making the mistake of thinking that vaccinations and immunizations are not as necessary in the present then they were in the past decades. It is this way of thinking that has lead to outbreaks of vaccine-preventable diseases. In 1974 Japan had only 393 cases of pertussis due to the preventable vaccinations. Japan natives began to feel confident that the vaccinations were doing their job in preventing any outbreak of the disease. By 1976, just two years later, there were so few cases of pertussis being reported that the population began to feel that receiving the vaccination was no longer needed. This led to the population becoming more relaxed about receiving the pertussis vaccination and the number of people being vaccinated declined. Three years later in 1979, there were 13,000 cases of pertussis and 41 pertussis related deaths. These were just the reported cases and deaths. There were still many cases and deaths that went unreported. This sudden outbreak caused the government of Japan to begin mandatory vaccinations of the acellular pertussis vaccine. The number of cases of pertussis decreased significantly (www.cdc.gov). Another outbreak of this nature is very probable if the number of people getting vaccinated declines. Vaccinations were designed to save people's lives and to give a sense of security from life threatening diseases, but if we take vaccines for granted we will continue to make ourselves susceptible to outbreaks. Some parents feel that if they have not met anyone with a vaccine-preventable disease or have not known anyone who has died from one, then they simply are no longer a threat.
During the 2012 Super Bowl Championship in Indianapolis, Indiana, the vaccine-preventable disease known as measles found its way into a crowd of more than 68,000 sports fans. Days later there were a reported 14 cases of measles. All of which were traced back to Super Bowl Championship game. Measles has an incubation period of more than a week. Meaning that whoever first contracted the virus may not have even known that they were carrying the disease and may not have shown any alarming symptoms until days later. Measles is highly contagious and the virus lives in mucous membranes such as the nose or throat. If an infected person even talks, coughs, or sneezes, those viruses are distributed onto many surfaces and live for up to two hours without a host. All 14 cases had previously decided to refrain from receiving the MMR (measles, mumps, and rubella) vaccine (Morris, 2012). Children who were not vaccinated were exposed to this deadly disease. This occurrence is an example of how easily a vaccine-preventable disease can be spread when a number of people refuse to get vaccinated.
It is easy to think that a threat does not exist if you cannot see it. This is the main assumption that parents make in order to give justification to not receiving vaccinations. The flu vaccination became a necessary step in prevention during the 2009 Swine Flu pandemic. The N1H1 strain had found its way into humans and spread rapidly. The World Health Organization had to raise the alert level to the highest level possible because the swine flu was spreading through the air and had hit worldwide. In America, about 25% of the population was affected. Waiting until an outbreak hits is not the goal in preventative vaccines. When an outbreak hits those who are not vaccinated risk their lives and the lives of others. Most importantly, parents are risking the lives of their children. In order to prevent outbreaks we must vaccinate. Parents need to keep their children safe by getting them vaccinated.
With a solution that seems so simple we are beginning to see a trend of parents still showing resistance to getting their children immunized. The most obvious culprit would be the myth of autism. In 1998, Andrew Wakefield, M.D. and his colleagues published a paper suggesting that the measles, mumps and rubella vaccine (MMR) caused symptoms associated with autism in children (Salahi, 2011). This started a domino effect in the health field and the number of parents claiming vaccinations was the cause for neurological defects in their previously healthy child began to rise. Parents began to fear that vaccinations could give their child autism. The media saw a story and blew up the accusation into a worldwide scare. Every news station, talk show, magazine and newspaper was writing about the possible link between MMR and autism. There has not been a single scientific study that supports the association between the two but the media successfully blew the story up so big that the fear and concern is embedded in parents' brains. How could the government allow a vaccine that caused a neurological defect in children? What side effects will come with the other vaccines on the market? How can we trust a multibillion corporation to provide safe and thoroughly tested vaccines? Who can we trust? These and many more questions were brought up by parents and are still being debating in politics today.
Wakefield's paper has since been partially retracted due to unethical practices and misleading data. Wakefield was also banned for practicing medicine in the UK in 2010 (Salahi, 2012). The original research for this paper was funded by two attorneys's hired by families who believed their children were victims of the measles, mumps, and rubella vaccine. Since the original and only support of this theory is proven irrelevant, parents should feel at ease. This is not the case. Celebrities such as Donald Trump, Jim Carey and Jenny McCarthy are all advocates against vaccinations. Public opinion is getting in the way of scientific results and data.
There are documentaries such as The Greater Good that give fire to the vaccination debate. These documentaries are done from the perspective of one side. That is the problem with movies and documentaries; whoever is funding the production has the decision in the final information given to the public. The Greater Good was compelling and almost convincing. Parents who do not have all the information on vaccinations could fall prey to stories in the media. The concerning part is that parents are not getting all the facts and these producers are still getting paid for it.
IV. Vickie's Plan.
The influence of media is just one of many reasons that parents are showing resistance to vaccinations for their children. I decided to do research to focus our attention and address the reasons for parents overlooking the importance of immunizations and routine vaccinations. The name I chose for my project is Vickie's Plan. Vickie is an acronym for the six focal points of my project: vaccinations, immunizations, communication, kids, information, and education. By conducting research and communicating with parents in our community we can better educate ourselves of their (the parents) needs, concerns, and questions on this important matter. If we can ask the parents what they want to know and work towards meeting their demands, then maybe we can pinpoint a few ways to improve communication. The main question we are trying to answer is, “What can we do as a medical community?” What can we do to alter our approach and what barriers are we up against? We cannot make a convincing argument if we are not focusing on the main concerns of parents. Through my research I hope to give light on the exact reasons that children in our community are not getting vaccinated.
V. What I found.
One of the forms of research that I conducted was a kind of social science experiment. Through the help of family friends and the family practice that I work at, I was able to gather 12 parents for a qualitative study. I started off by asking the parents what their view points were on getting children vaccinated. This conversation went on for most of the meeting time and surprisingly the parents were very open with their opinions. The second part of the presentation I showed the parents a couple of photos of children with measles, mumps, diphtheria and the effects of meningitis. The last part of the presentation I read stories from parents who lost children due to vaccine-preventable diseases. Afterwards I asked the group of parents if their opinions on vaccinations had been altered in anyway, whether it be positive or negative, and what parts of the presentation did they find the most compelling?
All of the parents at the meeting had their children immunized. All but one parent had said they agreed to the immunizations because they were always told that it was the right thing to do but had no other relevant information about the benefits of vaccinations. The other parent had worked in the health field for many years and knew of the benefits with getting her children immunized and most importantly the risks with not doing so. The conversation began to take off when one of the mothers, who we will call Jessica, had told of two couples who were very close friends of hers. These couples had decided against immunizing their children and were going to home school their children. Jessica said that the reason they denied immunizations was because they did not believe in injecting so many chemicals into their children and were more afraid of the side effects than the children ever actually coming into contact with any of the diseases. Another parent, David, was very upset by this comment and could not understand how parents who were immunized as children would not want to give their children the same protection. Besides Jessica there were two other parents who knew of couples who had also decided against getting their children immunized. It astonished me that with a group so small 25% knew of children who were not immunized. All of which were presently in our community and functioning in daily lives just like the rest of us. In these cases the problem was not inconvenience or cost. It was more health based and ethical.
After the presentation, many parents displayed more concern for the possibility of an outbreak of vaccine-preventable diseases. One parent even wondered if the viruses that we vaccinate against could mutate to attack those who did get vaccinated. The parents were then very concerned for the unvaccinated children and wondered if their parents knew the significance of the gamble they were taking with their children's lives. If we do not openly know who is vaccinated and who is not then we also would not know if someone is carrying a disease until the symptoms progress. Those who are not vaccinated are taking a chance. If a carrier comes into contact with someone who is not vaccinated then the virus spreads. Then the newly infected person takes the virus home to their family and children, and if they have other friends who denied vaccinations then they will catch the virus also. An outbreak is highly possible within a community that does not get vaccinated.
The parents felt that the most compelling parts of the presentation were the photos of the children with the diseases and the stories of the parents who lost children to vaccine-preventable diseases. They said that it is one thing to hear about the effects of the diseases, but it is more concerning to actually see these children in pain and to know that these diseases are still present. During the story part of the presentation two of the mothers began to cry because of the emotions triggered by the thought of potentially losing a child. One of the mothers, Sharon, felt that if the parents of the victims had only researched vaccinations more then maybe they could have saved their child's life. The parents said that if their child had died due to a vaccine-preventable disease they would never forgive themselves. I found that it is the visual and audial examples that successfully got the parents attention. If we can trigger emotions and make a situation as realistic as possible, then parents are more open to what you are trying to get across to them. Overall, it was the combination of all three elements of the presentation that had the greatest impact. “You can't just put a picture up and say this is what will happen if you don't vaccinate your children. You also have to give the facts, data, and statistics in order to really convince parents,” said Jessica. It was brought up how often we see public service announcements against smoking and how that message is permanently embedded in our minds. It was suggested that we should have public service announcements constantly running on television so maybe we can get through to parents.
I asked the parents if they were ever worried about the myth of autism and the measles, mumps, and rubella vaccination? The parents of children between the ages of 10 and 14 (3 parents) said that they were very scared that their child could develop autism because of the MMR vaccine. This was around the same time that the accusation was made about the link between the vaccine and the neurological disorder. The parents who had their children within the past 5 years (7 parents) said that they always had an underlying concern because of all the media talk, but they talked to pediatricians and family friends in order to make their decision. “Any decision concerning your newborn's life is scary. You just have to do as much research as possible and make the best decision you can. Unfortunately, I don't think many parents actually take the time to do any research. They just believe what they see on TV,” said David. I asked if the parents knew that the original paper linking symptoms of autism to the MMR vaccine had been partially retracted and the doctor had been banned from practicing medicine in the UK. Only five of the parents knew of this. The parents felt a sense of relief. I wondered how seven of the parents had gone about their daily lives without ever hearing of this? The parents wondered the same thing.
The second part of my research was a quantitative survey study. Often times surveys seem to be the simplest way of quantifying data but I found it fairly difficult to convince parents to take time to fill out surveys on vaccinating children. I was able to get a total of 50 surveys filled out. Unfortunately, I would have had more surveys but there were a few that were contradicting in the answers given. This was either due to a misunderstanding of the questions or human error. I wanted to get a varying population to complete the surveys so I picked locations that had somewhat different social classes. The locations I chose were Wal-Mart, a hotel staff meeting, and an upscale spa and health center. For the purpose of this research and for the safety of the participants, I decided to keep the surveys and all participants anonymous. The survey questions were based on three categories:
1. Of the parents who filled out a survey, how many got their children immunized?
2. What information would compel a parent to get their children immunized?
3. What incentives, if any, would parents like to receive for getting their children immunized?
Actually designing the surveys proved to be the hardest part of my research. I did not want to influence a parent's answer with the wording of my questions. I wanted truthful and honest answers from the participating parents. Not only was I conscious of the wording of my questions but I also had to be careful with the order in which I listed the questions. It is easy to alter a person's opinion just with the structure of a survey. Because of this I had to make several rough drafts of surveys until I found one that I felt would not influence the parents' answers. I had to make it clear that their answer, any conversation, and their identity would be kept anonymous. Parents view talking about this subject as a social taboo. With so many people having opinions about the matter no one wanted to be the center of a potential debate.
Of the 50 surveys filled out by parents, 97% reported that they had their children immunized. The remaining 7% refrained from getting their children immunized. It may seem like 7% is small percentage, but 7% out of only 50 surveys is pretty alarming. Of the 7% who decided against immunizations, all openly admitted to being undocumented immigrants. They said that in order to stay in the country they have to stay under the radar of any officials. The fear of getting them and their family deported back to Mexico made immunizations the last of their worries. Every year there is an estimated 1.2 million legal and illegal immigrants that enter into the United States. Of that 1.2 million, one third of them do not have health insurance (Camarota, 2001).
The undocumented parents that I talked to said that they wanted to get their children immunized but did not know where to go for help. Not only are these children not immunized but there is a risk that they could attain the virus and spread it to the rest of the population. Foreign travelers and immigrants can come in and out of the country and easily carry a number of vaccine-preventable diseases. Even though a majority of the population in the United States does get vaccinated, the population of people that do not get vaccinated are not accounting for the number of foreign travelers who are not vaccinated and have a greater chance of coming into contact with vaccine-preventable diseases. There are places that undocumented immigrants can go to get healthcare even if they do not have insurance. University of New Mexico Hospital will give medical care to anyone who does not have health insurance. This program is paid for by taxes. There is a population that voluntarily refuses vaccinations, but there is also a population that wants to be vaccinated.
I used questions in the survey that were based on my findings from the social science experiment in order to further find out the things that would compel parents to get their children immunized. Examples of the questions asked were:
1. Would you be more likely to get your child vaccinated if you knew someone who ended up hospitalized due to a vaccine-preventable disease?
2. Would you be more likely to get your child vaccinated if you knew someone who either died or suffered a loss due to a vaccine-preventable disease?
3. Would you be more likely to get your child vaccinated if you knew more information and statistics on vaccinations?
4. Would you be more likely to get your child vaccinated if you saw pictures of children suffering from vaccine-preventable diseases?
For question 1, I found that 48 out of 50 of the parents that were surveyed said that knowing someone who had been hospitalized due to a vaccine-preventable disease would compel them to get their children vaccinated. 49 out of 50 parents would get their children immunized if they knew someone who had died or suffered a loss due to vaccine-preventable diseases. 29 out of 50 parents would get their children immunized if they knew more information and statistics on vaccinations. 33 out of 50 parents would get their children immunized if they saw pictures of children suffering from vaccine-preventable diseases. Based on these results, parents are more terrified of death or severe hospitalization in order to be compelled to get their children immunized.
Incentives have been a great bargaining tool in the past and have actually been used by other healthcare programs to promote better healthcare worldwide. I wanted to know if offering incentives to parents would convince them to get their children vaccinated. The surveys gave five different options for incentives for parents to choose from. The parents had a choice of receiving free movie passes, a $10 incentive, a $10 gift card to a restaurant, vaccinations offered free at school, and a tax deduction for getting immunized. The data gave results of: 50% of parents would get routine vaccinations for their children if a tax deduction was offered, 24% of parents would get routine vaccinations for their children if they were offered free at school, 14% of parents would get routine vaccinations for their children if a $10 gift card to a restaurant was offered, 8% if a $10 incentive was offered, and 4% if free movie passes were offered. There was an option for getting routine vaccinations for children regardless of the incentives. It should be noted that this option had a 0% result. The parents that completed the survey all chose an incentive for vaccinations. I was not sure if putting tax deduction as an option was the best choice or even a possibility in reality. This may have been the most popular option due to the status of our economy today. Parents were more likely to choose incentives that helped them both financially and with convenience.
In conducting this research I have found new ways to look at the reason that parents are showing resistance to getting their children immunized. There is not a black and white solution to this problem and the sooner we open our ears to the concerns of parents the faster we can close the communication gap between healthcare officials and parents in our community. My research was very experimental in that I was not sure what would happen or what I would find. This was the first time that I have ever gone out into the community and conducted social science experiments. My experimental population was rather smaller than what I had hoped for even though the findings were still important.
For the future, I plan on continuing my research and working towards finding more answers to shrink the communication gap. I am currently working on proposals in order to apply for grant opportunities. There is the Bill & Melinds Gates Foundation which is offering $250,000 and The Grand Challenges Explorations which gives support to early-stage research projects focused on targeting life threatening diseases. Phase I grants are worth $100,000 and the following Phase II grant is up to $1,000,000. Winning a grant would allow me to hire researchers to help in initiating further research that way I can increase my research population. Funding would also help in the initial cost of research supplies such as paying for surveys to be printed and advertising to increase the testing size of my social science experiments.
By continuing my research I want to take my findings to New Mexico Department of Health. If we can pin point a few aspects and put them to use then we can begin to make a difference. One thing that I did agree with in the documentary The Greater Good was that perhaps if we altered the vaccination schedule so there would be more time in between each round of vaccinations, then parents would feel more at ease. If we could figure out the safest amount of time to permit between vaccinations then doctors would more of a chance to notice any possible side effects or sensitivities to certain vaccinations. This could eliminate some of the stress and uncertainties associated with vaccinating children, at least from a parent's point of view. It would be a goal to see my research improving the health of New Mexico. I would also further my research on both legal and illegal immigrants in our region and work towards helping get them vaccinated in a safe environment.
VII. The crash and burn process.
When I started thinking about projects I initially started to take the problem of parents refusing to immunize their children in a different direction. I was originally focused on improving the communication between the medical community and parents in the community. I automatically made the assumption that the problem was in a lack of technology support systems. I wanted to completely design a new website specifically for busy parents that made navigation simpler and answering questions easy. The Center for Disease Control has a very informative website but if you put parents to try to find information on their website most would want to pull their hair out. I know I ran into a few problems navigating through the CDC website and getting my questions answered over the phone. One thing that I really wanted to do with a website was set up a board of experts to answer any questions within a matter of hours. The board would have consisted of two pediatricians, two family practice physicians, and 2 immunology experts. The parents could pick which experts they want to answer their questions. This system would have also given us insight on which type of expert parents trust most.
I also wanted to design a cell phone app to make vaccination scheduling easier for parents. This app could hold appointments for multiple children and send reminders or alerts of appointments. There would also be a quick and easy alphabetical list of common vaccinations and information on the diseases they prevent. I wanted there to be a direct link to the website incase parents had more complex questions to answer.
The direction of my project began to narrow creativity towards a single focal point without looking at the big picture. I was doing exactly what I was trying to avoid. I was making assumption of what I thought parents needed in order to convince them to get their children immunized. Parents need the medical community to listen to their needs. Only then can we gain their complete confidence.
Camarota, S.A. 2001. Immigrants in the United States - 2000: A Snapshot of America's Foreign-Born Population. Center for Immigration Studies. Page 1-19. Retrieved April 19, 2012.
Centers for Disease Control. Pertussis vaccination: acellular pertussis vaccine for reinforcing and booster use-supplementary ACIP statement. Recommendations of the Immunization Practices Advisory Committee (ACIP). MMWR 1992;41(No. RR-1) Retrieved March 28, 2012.
Cochi, S.L. 2011. The future of global immunization: Will the promise of vaccines be fulfilled? A report of the CSIS Global Policy Center. Center for Strategic and International Studies. Pages 1-8.
Morris, Allie. 2012. Ind. Measles outbreak, linked to Super Bowl, raises vaccination concerns. Retrieved April 1, 2012.
Murphy, Kenneth. 2012. Manipulation of the Immune Response. Janeway's Immuno Biology 8th Ed. Pages 669-716. New York: Garland Science.
Salahi, Lara. 2011. Report Linking Vaccine to Autism 'Fraudulent,' Says British Medical Journal. Retrieved April 4, 2012.