Shame vs. empathy: addressing vaccine hesitancy

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Go to the comments section of any news story or social media post even remotely related

to vaccines and you're bound to encounter a lot of strong emotions, many of them negative.

There's usually a mix of frustration, judgment and shame with posters on either side of

the issue, accusing the other of ignorance, recklessness and gullibility.

During the COVID-19 pandemic when vaccine misinformation surged, my newsroom colleagues

and I received furious phone calls and messages from people upset that we were broadcasting

the guidance from public health officials around getting the shot.

But even though the sounds blaring at us from the phone and the sentiment behind those

accusatory emails definitely came across as anger, a recent opinion piece in the New York

Times is asking us to consider that the true causes of anti-vaccine sentiment are actually

rooted in fear and ultimately love.

I'm Catherine Jette and today on the big story podcast we're speaking with Dr. Elizabeth

Marnick, an immunologist who grew up unvaccinated about why shame and even facts don't work to

change people's minds and what it really takes to convince the vaccine hesitant to roll

up their sleeves.

Dr. Marnick, thank you so much for being here.

You're joining us at a critical moment really for science communication because we have childhood

vaccination rates dropping, misinformation, just rampant, just with measles for example,

Canada lost its elimination status last year as well as unfortunately the lives of two premature

babies who had been exposed to the virus in the womb.

So I'm eager to hear your perspective on this as a scientist, but first I'd love to hear

more about your background and how you ended up doing the work you do.

What was your experience with vaccination growing up?

Yeah, well thank you very much for having me.

I definitely have a unique perspective because I was raised in an anti-vaccine anti-science

household and I found science through a lot of really amazing teachers in high school and

from there I ended up going on to get a PhD where I studied aspects of the immune system.

So I started doing this work kind of because of that two background right when I when COVID-19

started happening in early 2020. I saw my professional world collide with my personal background

being raised in that anti-science anti-vaccine household. So I really felt like I had an obligation

to try to help mitigate some of the false information that I was seeing spread and communities

and online. Were there some tough moments along the way through this journey where you really had

to confront personally some of what you were told as a child?

Yes, so when I started college I still was unvaccinated but I knew that I wanted to study science.

So I entered college as a biochemistry major but I still was you know not sure about the whole

vaccine thing and it was through a whole process of learning things in school, building relationships

with scientists and my professors and friends and really starting to see that the stories that I

had been taught as a child were not true. So it was a really long process for me. It took me

about three and a half years before I finally felt safe enough to go into a clinic and ask for all

of my vaccines and by that point in time I was 23. And even after that you just

cribe in your piece in the New York Times about having another moment of doubt when it came to

your own child. Yeah so I think it's very easy for us to judge decisions that parents make and

I was very judgmental against my own mother for her decision not to vaccinate me and my brother

and I was very angry at her for a very long time and then I got pregnant and then I had my first

son Owen who is now almost seven and the minute like he came out and they placed him on my chest

I suddenly started to realize the enormity of the responsibility that we have as parents.

Nobody really does it for us right we're not given a manual in what to do and how to raise these

kids to be healthy and happy and have long lives. So I felt that immense pressure and in that initial

moment when I asked me if I wanted to get Owen vaccinated for his hep B vaccine because in the US

we typically um vaccinate for hep B at birth. I had that moment of hesitation because in my head

I was remembering all of those stories that my mother had told me and in that particular moment

those stories were louder than what I had known now as a scientist and as an adult. Luckily I had

some really good friends who I was talking to them about you know all of the concerns for my childhood

and they reminded me of all of the things that I knew like I knew these things but in that moment of

you know first time motherhood it was hard for me to remember them myself and I needed some of

you know that kindness and compassion for my friends to remind me these are the reasons why we do

this these are all the information and pieces of things that you know and you can make this decision

that you feel is best. So we ended up vaccinating Owen for hep B before we left the hospital

but I did have that initial moment of hesitation and how did going through that inform the work that

you do now because now you communicate to people about how science works in a way that makes sense

to maybe people without a science background. That moment really gave me immense compassion and

empathy towards my mother and I think that's really what started helping heal our relationship

because at the end of the day I know she loves me and I know she loves my brother and I know that

she was trying to do the best that she could and I finally started having conversations with her

after that moment asking her why did she make that decision before then I never really wanted to know

I was too angry to really engage with her and she told me that she really felt dismissed by my

pediatrician we also were low income so it wasn't easy for us to go find just another pediatrician

to answer her question so she decided that because she couldn't get information in a way that she

understood that alleviated her concerns that the safest decision was just to not vaccinate us

and now I don't agree with that decision now but I do have immense empathy and compassion because it

is really hard to navigate information particularly now when we have the internet and false

information is spreading even more easily than it was back when I was born so that really informs the

way in which I communicate I like to lead with curiosity and empathy because if we can build from

that common goal of wanting to keep our families safe oftentimes I can find inroads to having

those conversations with people and helping them see the benefits of science and vaccines how do

you think most people are treated today if they say go into a doctor's office are recommended a

vaccine and then express some doubts so from the conversations I've had it really can depend

but a lot of times there's still kind of that gut instinct to dismiss the concerns that

that somebody might present because you know as a scientist or as a medical clinician

we have a lot of information we have a lot of experience and sometimes when somebody comes to us with

questions or concerns it can almost feel like they're personally attacking us or values

and that you know interaction when you initially dismiss a patient or somebody coming to you with

questions that can push them away and then into you know the arms of wellness or people spreading

false information because they're going to be kind they're going to be compassionate they're

going to sit with them and answer their questions even if the information they're actually giving them

isn't the truth so unfortunately I think it's getting better in some cases but I still have a lot of

people come to me and say that they had questions they had concerns and they weren't able to get

answers from the people they asked because they were dismissed. Does it seem in some ways as though

hesitancy around vaccines has been given more legitimacy right now because an anti-vax activist

is serving as the US health secretary for example we have some jurisdictions that are easing up on

school vaccine mandates some places are ending free access to certain shots. Does it feel like

those anti-vax voices are louder than ever? Yeah it does and I think it's even harder now and this

is why I think it's even more important that we really deal with this situation with compassion

and empathy because when the head of HHS is you know helping spread this false information about

it's no wonder that people are going to be confused and have questions it's even more understandable

now and I think we have to just realize that we're going to start seeing more and more people having

questions and the gut instinct and the first thing we do can't be to shame them or blame them or

call them stupid because that's not going to help us and that's going to actually make it worse.

So on a personal level we have this scenario of inside the doctor's office of doctors needing

to show compassion and to take these concerns seriously but it zooming out what can governments

and public health departments do in their approach to vaccine policy that will give that degree

of compassion to people who are unsure. Yeah that's a great question and I don't think there's one

easy solution for this but I think oftentimes communication really comes from the top down

so for example in the United States messaging around a vaccine historically has you know come from

the CDC they might have a flu vaccine campaign that frames the importance of flu vaccines in one way

and that gets deployed you know throughout the country but that often misses the people who

maybe resonate with different values or have different concerns or have different lived experiences

so one thing I think that's really important is to consider the ways in which we communicate

and try to frame the communication that we deliver in ways that resonate with you know the

community that we're trying to reach. For example the Muslim community have concerns around

pig products so if we're not making it clear whether or not these vaccines have any pig products

in them that could make it hard for that population to know whether or not they should make that

decision to vaccinate. So one thing I think health departments and governments can do is really try

to work with individual public health departments work with community organizations to try to frame

the message and the communication around what that community actually needs and the questions

that that community actually has. So looking at more of a grassroots approach as opposed to

one big message for everyone just go get vaccinated. Exactly so I'd like to think about it like a

bottom-up approach so figuring out what is you know the needs of that community and then how can

you help enable that community to answer those questions.

Do you see why it's a big ask for some people to approach those with anti-vaccine

convictions with empathy and compassion when those beliefs put the lives of so many people

at risk like you can see where the frustration comes from. Oh absolutely and I honestly am also

you know angry and frustrated that we're in this situation it's really concerning to me to see

Canada lose its measles elimination status the US is likely going to lose it very soon as well

we see mumps we see all of these vaccine preventable illnesses resurging so I very much do

understand how hard this is but I think I like to think about what is the end goal here. If our

end goal is to protect our community more by increasing vaccination rates then we need to be able

to have these really hard conversations in a way that might actually help us reach those people

who have questions. So I like to think about it in the way that like my anger is directed at people

who are knowingly spreading false information people like secretary Kennedy right now who are

knowingly spreading this false information much more than with the parents who are trying to make

the best decision they can and a system that is often very confusing and hard and challenging

for them to navigate. Your piece in the Times really reframed it as not so much a decision made

out of anger but one made out of love it's just parents love their children and we have to

believe one thing or another if we're not experts in immunology we have to either believe

what is being told to us by public health officials or what's being told to us by these quote-unquote

experts online it's sort of a leap of faith one way or another but it all stems from just loving

your children. Yeah exactly and I think that is a ground that we can build from right when we

recognize that common love of trying to do the best you can for your kids that is usually a great

place to build from and oftentimes when I'm having these conversations I don't think about it as

trying to change the person's mind in that moment but I think about it as planting seeds and being

a person who they feel safe enough to come back to if they have future questions because if I

call them stupid or if I'm angry or if I yell at them they're not going to feel safe to come back

to me with their questions so then they're going to go to somebody else who maybe won't give

them information that is actually accurate. Is it possible that what we're seeing is because

vaccine rates were so high in the past and diseases like the measles were just not a thing in

North America that people just don't really understand how serious they are. Absolutely I always

say that vaccines are products of their success. If you talk to you know grandparents right now I've

been talking to a lot of grandparents in the US there's an organization called grandparents for

vaccines that's trying to share a lot of these stories because they remember what it was like

before we had these kinds of vaccines and they understand the value because they remember the

consequences of these infectious diseases. For us we don't usually have to think about it

because we're lucky that depth theory at and you know measles until recently it wasn't as common

so in that way I think it's really important that we share stories and experiences from those

older than us who do remember what it was like to live in a time where these vaccines were not

available. Are there any jurisdictions right now where you're hearing of vaccine rates on the

rise where governments or public health departments are getting it right? So I know I live in the state

of Maine and I know after I forget the exact year but Maine did get rid of its religious vaccine

exemptions so now the only way you can you know go to a public school and not be vaccinated is if

you have a medical exception. So I know we have seen you know pretty good vaccine rates as a result

of that policy and in general you know there are if you look at polling data at least based in the US

the majority of Americans still believe in the value of vaccination it's just that we are seeing

this increasing percentage of people who now have questions and concerns and might be more likely

to delay those vaccines. So I think when we're online it might feel like everybody doesn't trust

vaccines all of a sudden but when we look at the data the majority of of people still do

the concern though is that as this false information spreads as we have leaders who are you know helping

to spread it that we're going to continue to see those vaccine rates dropping and that's why it's

really important to try to intervene and have these conversations now before it gets worse.

And those interventions as you mentioned are going to come from the bottom up and are going to

lead with compassion and empathy. That is the best way forward and I think another really

per like helpful thing to remember is that there's a difference between being like fully anti-vax

and like committed and like advocating in that realm versus being vaccine hesitance

and I feel like a lot of times parents might come in with questions they might bring up concerns

and they get labeled as anti-vax when they're really just asking questions because they're truly

concerned and worried and need that information. So again when we have that bottom up type of

communication we can have those interactions with patients and parents and figure out what is it

that they're concerned about what is it that they're hearing and then help connect them to the

information that they need with empathy and compassion and storytelling because data alone isn't

going to be enough but those relationships you can build in community can really make the

difference because it's okay to ask right I mean anytime there's a medical intervention involving

your child you would think that a parent would have questions and those are valid.

Absolutely yeah questions are always valid and that's why it's really important that when those

questions are asked they're handled with empathy and care. Okay well thank you very much for joining

us today Dr. Marnick you've given us a lot to think about. Thank you so much for having me.

And that was the big story. We'd love to hear your feedback on this conversation send us an email

at hello at the bigstorypodcast.ca or find us on blue sky at the big story. If you know someone who

might enjoy this episode feel free to send it to them. New episodes publish every morning Monday

through Friday and don't miss our weekend lessons. I'm Catherine Jette. Thanks so much for listening.