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How to talk to parents about vaccines in the age of social media

Patricia (Patsy) Stinchfield, MS, CPNP, CIC

Senior Director, Infection Prevention & Control

@InfectiousPS

Patsy.stinchfield@childrensmn.org

Oct 11, 2019

IANP Conference

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Describe effective communication strategies

Review the current types and rates of vaccine exemptions, a measureable result of vaccine confidence/hesitancy

Discuss recent research of Facebook users and the categories of vaccine hesitant parents to know how to best communicate the value of immunizations

Correct misinformation regarding vaccines

Offer a challenge to conference participants

Objectives

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Most measles since 199278% in completely unvaccinated

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• Have been a Nurse since 1978 and a PNP since 1987

• Spent 36 of my 41 years in Pediatric Infectious Disease

• Have worked in 2 Children’s Hospitals with the sickest of the sick

• Cared for children pre-Hib vaccine, helped infants with pertussis

• Many babies who became deaf from meningitis or died

• I have helped families say good-bye to young children and teens who are dying of a vaccine preventable disease like Hib and Flu

• I have carried a baby to the morgue after dying of Hib

• I have helped lead through 3 measles outbreaks including one that lasted over a year with 440 cases and 3 children’s death

• I have vaccinated my children

• I have become a grandmother and have seen her start her shots

Story-telling--an effective strategy

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• 4 year old, unvaccinated girl, nearly died

• Ventilated in the PICU for days

• Mom said:

“All I heard about vaccines were that they cause autism. I didn’t want that so I didn’t vaccinate. If I knew this could happen I would never have skipped vaccines. I wish someone would have told me instead of saying ‘OK’ when I refused the Hib vaccine.”

She survived and was started on her catch-up schedule prior to discharge.

Hib epiglottitis at Children’s of Minnesota in 2012

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Vaccine hesitancy—not a new issue

“In 1736 I lost one of my sons, Franky, a fine boy of four years old, by the smallpox, taken in the common way, I long regretted bitterly, and still regret that I had not given it to him by inoculation.”

“This I mention for the sake of parents who omit that operation, on the supposition that they should never forgive themselves if a child died under it, my example showing that the regret may be the same either way and that, therefore, the safer should be chosen.”

Benjamin Franklin, 1788 Autobiography

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Family stories change mindsOutbreaks change minds

• Television news airs photos a family has shared of their 8 year old son “Lucio” who died of Influenza A.

• His parents’ hope is to alert parents in order to prevent other children from dying.

• Droves of parents called providers concerned asking for influenza vaccine

• Telling the real stories makes a difference

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What is causing the drop in vaccination?The movement/issues are diverseThe Economist March 28, 2019 accessed April 6, 2019

• All political ideologies, demographics

• Shared distrust of public health

• Underlying values lead to skepticism about science

• May want a ‘natural’ life

• Some have religious concerns

• Many fret over rumors

• Some are not anti-science but anti-gov or anti-Pharma

• Some cherish liberty above all

• “My child, my choice”

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What is causing the drop in vaccination?The movement/issues are diverseThe Economist March 28, 2019 accessed April 6, 2019

• Main advice is to stop being passive

• Speak up more

• No silent bystanders

• Use more stories, less stats

• Listen more, talk less

• Have empathy

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• University of Pittsburgh

• Analyzed Facebook comments to a Pro-vaccine video of 197 commenters (Moms)

• Over 2 years of comments analyzed

• 36 states 8 countries

• 56% Republicans

• 11% Bernie Sanders

It’s not all about autism: The emerging landscape of anti-vaccination sentiment on FacebookBeth Hoffman Vaccine 2019.03.003.

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• Four Themes emerged:

− TRUST—big Pharma, medical collusion, personal liberties

− ALTERNATIVES—chemicals, toxins, use homeopathy instead

− SAFETY—Perceived risks>benefits, religious/moral concerns

− CONSPIRACY--Gov is hiding facts, Pharma lies, Polio doesn’t exist

− Thus, HCW must determine the origins of the misinformation to determine best approach

− Don’t Assume

− Listen First

It’s not all about autism: The emerging landscape of anti-vaccination sentiment on FacebookBeth Hoffman Vaccine 2019.03.003.

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Perspective is needed. CDC notes:www.cdc.gov/vaccines accessed 4/6/19 MMWR Weekly/ Oct 12, 2018/67 (40);1123-1128

• Overwhelming number of US parents vaccinate their kids

• Majority of American kids (72%) follow the vaccine schedule

• However the number of completely unvaccinated is rising

• 2017 1.3% of 2 year olds had no vaccines up from

• 2001 0.3% were totally unvaccinated

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PRO Vaccine Anti-Vaccine

Acceptors Vaccine- hesitant Rejector

Agree with or do not question vaccines

Are unsure about, delay, or choose only some vaccines

Completely reject vaccines

Child fully immunized Child under-immunized Child un-immunized

Believe vaccines are safe Concerned vaccine side effects outweigh benefits

Very concerned about vaccine side effects

Believe vaccines work Concerned vaccines might not prevent disease

Doubt vaccines work

High trust in provider Desires a trustworthy provider

Low or no trust

Interest in vaccine infofrom provider

Interest in vaccine info from provider

No interest in vaccine info

~70-90% ~10-30% 1%

The Spectrum of Vaccine Acceptance or RefusalOpel, NFID Clinical Vaccinology Course Spring, 2014

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Assess Origins of Concerns: Reasons Parents Give Not to Immunize

• Medical

−Contraindications

−Precautions

• Safety

-Side effects

-Medical accidents

• Philosophical

− Individual rights

−Alternative health

• Religious−Not health care consumer

−Human or animal tissue in vaccines

−“Good health is achieved through seeking God”

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•Corroborate. Acknowledge the parent’s concern. Find a point of agreement that sets respectful tone

•About me. Talk about what you have done to build your knowledge base on the topic. Share your experiences.

•Science. Share what the evidence says about safety.

•Explain/Advise. The call to action to choose to vaccinate

CASE model of communicationhttp://www2.aap.org/cisp/pediatricians/riskcommunicationvideos.html

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Shared goals in safety

parent

safety

clinician

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Emphasize ongoing safety monitoring

• Many ways that vaccines are monitored on an ongoing basis:

• Vaccine Safety Datalink (large HMO data analysis)

• VAERS (Vaccine Adverse Event Reporting System through the CDC & FDA, relies on providers) http://vaers.hhs.gov/

• CISA centers (6 centers for immunization safety assessments)

• Ongoing post-marketing surveillance by manufacturers

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• Added for a specific purpose:

• Adjuvants boost a stronger immune response, eg. Aluminum salt

• Preservatives prevent contamination, eg thimerosal only in multi-vial influenza

• Stabilizers protect the antigen in transport and storage, eg. sugars

• Residual trace amounts from manufacturing:

• Cell culture materials to grow antigens, eg protein in flu

• Inactivating ingredients which kills virus, eg. Formaldehyde

• Antibiotics to prevent bacterial contamination, eg. neomycin

Excipients in vaccines are safewww.cdc.gov/pinmbook.excipients table

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“Toxins”: The dose makes the poisonDr. Cami Ryan

• Too much water can be toxic, so is too much salt or alcohol

• https://camiryan.com/2014/03/05/the-dose-makes-the-poison/.

• Accessed 6.6.19

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Presumptive ApproachProvider-Parent Vaccine Discussions at Health Supervision Visits

• Presumptive

• “We need to do some shots today”

• “It’s time to start one year old vaccines…we’re going to be doing 2 live vaccines today; the MMR and chicken pox shots”

• Douglas J. Opel, MD, MPHAssistant Professor of Pediatrics University of Washington School of Medicine Seattle Children’s Hospital

• Participatoryconversations

• “What do you want to do about shots?”

• Clinicians positively influence parental immunization decision-making

• The start of your immunization conversation will impact the outcome

• Pursue the recommendations as you would other life-saving medical conversations

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• Skilled facilitation but collaborative

• Directed conversation with specific objective

• Patient/Client centered & involved

• Personal affirmation

• Aims at motivating behavioral change

• Explores one’s motivation rather than end decision

• Helpful when the person is in an ambivalent situation

• Doesn’t focus on correcting misinformation

• Requires active listening

• Empathy

• Builds trust

• Takes time

Motivational Interviewingwww.WHO.int/immunization/programmes_systems/Training Module_ConversationGuide_final.pptx

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• What do you already know about vaccines?

−Help me understand…

• Would you like vaccine information from me?

−May I give you the latest I have on…

• Has our conversation changed how you think about vaccines?

−Yes. Let’s do this today for your child’s health

−Maybe. I am happy to talk more, when can you come back?

−No. I understand. I am always available if you want to talk further. Please call.

Ask Questions

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• Vaccine adverse events are extremely rare • CDC analyzed 67 different vaccine research studies. April, 2015

− For kids born in the last decade:

− 322 million illnesses prevented

− 21 million hospitalizations prevented

− 732,000 deaths prevented over the course of their lifetimes

• NO evidence vaccines cause autism

− Risk of anaphylaxis 1-1.3 in 1,000,000 doses− Pediatrics Maglione, M and Gidengil, C. 2015

• Risk in perspective~

− Car accidents = 9,000 deaths in children under 12 yrs old in 2002-2011. 1 in 3 were not buckled up.

Share what is proven:Vaccines are Safe

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We have a social contract to protect each other. Use Analogies

Community Safety on the roads Second hand smoke

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• Fear that vaccines/additives are unsafe

• Fear of getting the disease the vaccine prevents

• Thought that “natural disease is healthier”

• Address possible lack of access

• Disease dangers and mortality not evident

• Skepticism that all are needed (varicella)

• Concern over the number of injections

• How to Communicate with Vaccine-Hesitant Parents, C. Mary Healy, Larry K. Pickering Pediatrics Vol 127,

Supplement 1, May, 2011

Cover common concerns

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MMR Does Not Cause Autism

• 1998: Original theory was based on a study of 12 children, 8 of whom had autism thought by 1 British physician to be caused by MMR

• 2004: Co-authors (10 of 13) have since pulled their names from the research and the Lancet has published a retraction

• Andrew Wakefield, lead author has since lost his license to practice medicine and reprimanded by British medical board for “ethical lapses”. NY Times May 24, 2010Taylor B, Miller et al. Autism and MMR vaccine; no epidemiological evidence for a causal association. Lancet 1999;353:2026-9

• 2019: 657,461 Denmark 1999-2010. All children, those with risks, siblings with autism & with MMR & other vaccines. In repeated controlled, population-based studies, no link was established.

Annals of Internal Medicine, Mar 5, 2019 Anders Hviid.

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More lives saved by vaccination second only to sanitation

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Infant’s immune system’s are strong

• Take a moment early on and briefly describe the power of the human immune system

• The immune system has the capacity to respond to extremely large numbers of antigens; possibly 10,000 or more

• 2 billion CD4 T lymphocytes can be replenished daily

• T and B lymphocytes are abundant in a “lock and key” ability to deal with antigens individually; therefore no “immune system overload”

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The Ocean Analogy

• When an infant is in the mother’s womb, they’ re in a sterile environment. When they enter the birth canal and are born, they’re no longer in a sterile environment. Bacteria quickly begin to live on the baby’s skin, their nose, their throat. The average person has trillions of bacteria living on the surface of their body. We are able to make an immune response to these bacteria. If we didn’t, they would invade the bloodstream and cause death. Each bacterium has 2,000 to 6,000 proteins that our immune system is able to handle. If you consider all 14 vaccines given to children, it’s probably 150 immunological components or proteins. That’s literally just a drop in the ocean.

• Dr. Paul A. Offit, Children’s Hospital of Philadelphia

Division Chief, Infectious Disease Section

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No reason to delay vaccinesTo delay is to take an uneccesary risk

• Even premature babies have the immune capacity to respond to inactivated vaccines

• With few exceptions, when they are 60 days old, even in an NICU, babies are started on their immunization series and can make protective level antibodies

• Even children with some known immunodeficienciesare safer being vaccinated than infected (eg. HIV+)

• Offit, P. et al. Addressing Parents' Concerns: Do Multiple Vaccines Overwhelm or Weaken the Infant's Immune System? Jan. 2002. Pediatrics Vol.109 No 1, pp. 124-129.

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• Natural is seen as better. Describe how antigens in vaccines are seen by the immune system and stimulate antibodies

• By choosing not to vaccinate one takes on the risk of disease, so both vaccinating and not vaccinating carry risks

• Children unvaccinated against measles are 35 times more likely than immunized children to catch the disease.

• Salmon DA, Haver M, et al. Health consequences of religious and philosophical exemptions from immunization laws. JAMA 1999;282L 47-53

Natural is how vaccines work

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Talk more about HPV

• Mean age of first intercourse is 17.1 years for males and females

• HPV is most effective if given before “sexual debut”

• Anti-cancer vaccines are what science has been working toward

• Cervical cancer is silent onset hitting at reproductive years.

• No evidence of neuromuscular impact of HPV vaccine

• You Tube video later learned to be fabricated

• It stings from adjuvant

• Beware of fainting

http://www.cdc.gov/nchs/nsfg/abc_list_s.htm

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Vaccine Myths Responses

−Cause specific diseases-SIDS, autism

−Causing the disease vaccinating against, flu

−Fear of general side effects

−Natural is better

−Not necessary, diseases are gone

−Religious concerns

−Live vaccines safety

−Too many

−Overwhelming the immune system

−Babies are too weak

-Still no known cause for SIDS, autism but no relation to vax

-Flu shots are killed viruses, Nasal is inactivated by core T, neither can cause the flu

-AE’s are exceedingly rare

-Natural disease potentially life threatening

-Largest pertussis outbreak since 1950 in US and Europe

-IAC website has letters from religious leaders supporting vaccines

-We wouldn’t vaccinate against something that is not potentially life-threatening-

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Enhancing vaccine communication P. Stinchfield

• Use current information, VIS (Who reviews?)

• Communicate clearly in plain language with visual aids

• Use analogies

• Keep it interactive

• Use videos, group teaching

• Provide reliable websites

• Parent-to-parent sessions

• Taped phone messages

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Some “Do’s” Some “Don’ts”

• Listen first

• Start with the shared goal

• Be evidence based

• Emphasize disease risk

• Show photos of diseases

• Share your clinical experiences

• Share your personal story

• Make more time

• Be prepared to speak to each concern

• Answer their questions

• www.cdc.gov/vaccines/spec-grps/hcp/conversations.htm

• Flood with statistics

• Review the myths

• Use jargon

• Get preachy

• Lecture

• Shame or blame

• Compress risk

• Oversell efficacy

• Coerce

• Give up

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What Are Most Parents Concerned About? Pain

• Kennedy, A. et al Vaccine Attitudes, Concerns, and Information Sources Reported by Parents of Young Children: Results From the 2009 HealthStyles Survey Pediatrics Vol 127, Supplement 1, May, 2011

• Confidence in the necessity of vaccinations is high among most parents

• But concerns about safety (short and long term) is high too.

• Number one concern is PAIN!

• Increased number of injections = increased stress = perceived as a higher level risk

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What Can We Do About Pain?

• Continually assess for, listen to and respond to concerns.

• Do not assume someone else is covering it

• Provide helpful information and resources

• Focus on comfort measures that decreases stress for parent and child− Pharmacologic, try not to pre-medicate but may treat fever after

− “Buzzy”, Bubbles, light tough, feathers, child life specialists

− Behavioral Breastfeeding, sweet-tasting solutions, pacifiers, distraction, topical

local anesthetics, firm pressure with the alcohol wipe• Kennedy, A. et al Vaccine Attitudes, Concerns, and Information Sources Reported by Parents of

Young Children: Results From the 2009 HealthStyles Survey Pediatrics Vol 127, Supplement 1, May, 2011

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Summary of “who and how”Freed et al, Pediatrics Vol 127 Supplement 1, May 2011

• Use trusted providers in health care settings

• Actively reach out to parents of young children, pregnant women

• Emphasize facts on long-term effects/ SE

• Dads trust providers more but women make more health care decisions

• Use new social media methods young parents know (text reminders)

• Have doctors/nurses be the voice in mass media

• Direct parents to reliable provider/gov websites

• Do not underestimate role of all staff

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Variety of Approaches to Reaching the Vaccine Hesitant Infectious Diseases in Children June 2011, Volume 24. Number 6

• Education—sharing the science

• Legislative changes reducing opt out ease

• Clinic Policies on following the schedule

• Signed statements for those who opt out on knowing what risks are being taken

• Allowing teens to decide to vaccinate

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Variety of Approaches to Reaching the Vaccine Hesitant (continued)Infectious Diseases in Children June 2011, Volume 24. Number 6

• Financial impacts (higher premiums? Paying bills of those infected?)

• Social marketing

• Visuals of children with vaccine preventable diseases (http://www.texaschildrens.org/CareCenters/Vaccine/Default.aspx)

• Provider endorsement “I am vaccinated and so are my own children. I don’t want less for your child.” HCP’s hold the greatest influence. Pediatrics April 18, 2011 DOI: 10. 1542/peds.2010-1722S accessed 9/30/11

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Summary

• Many vaccine communication challenges exist in the practice setting today

• Determine the origin of concerns

• Address concerns with effective risk:benefit communication strategies

• Use a tool such as CASE to organize your thoughts

• Underscore safety is top priority for us all

• Use special approaches in unique communities

• Stress that safety monitoring is ongoing

• Address issues of pain for better compliance with vaccines

• Utilize creative strategies to communicate efficiently such as group classes, taped phone messages, reliable resources brochures, parent-to-parent sessions

• Keep communication clear, consistent, compassionate yet confident and be based on your trusted relationship

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Effective Communication Summary

• Listen First

• Ask what they are most concerned about

• Be prepared to speak to each concern www.cdc.gov/vaccines/spec-grps/hcp/conversations.htm

• Use science, but not science jargon

• Share anecdotes, but not exclusively

• Establish common ground: you both share concern for child safety

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Working with the Somali Community

Somali Employee resource group

Somali Clinicians Listening dinner

Somali Imam meetings

Ramadan Eid meeting and dinner

Public Meetings

Day to Day 1:1

Phone conversations and really listening

Translated materials

Ongoing community action

Hiring more Somali’s in HC

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WHO wants every child protected It’s how we stop imported cases Acessed 1.15.17

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State laws for medical exemptions only raise rates

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Will state laws be the answer?

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1. Story telling

2. Presumptive conversation

3. Motivational interviewing sessions

4. Ask more questions

5. Listen more, talk less, seek to understand

6. Speak confidently about safety

7. Offer pain reducing strategies that work

8. Answer questions with evidence

9. Be the local champion of advocacy

10. Lead by example—vaccinate your family

The Challenge: What strategy will you emphasize?

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Keep up the good work, vaccine hesitancy cannot be ignored

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Questions

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