Two Health Care Professionals Chat About Filling Needs in Food Allergy & Anaphylaxis Education

By Anne F. Russell BSN, RN, AE-C

Michael Pistiner, MD, MMSc has an important mission that he is well prepared to execute. He is board certified in Pediatrics and Allergy & Immunology and a pediatric allergist at Harvard Vanguard Medical Associates.  He is also a voluntary instructor of Pediatrics at Boston Children’s Hospital, Division of Immunology. Dr. Pistiner’s advocacy, legislative and educational initiatives have earned him prominent roles in many regional and national organizations, and prestigious awards and honors.  He voluntarily consults for Massachusetts Department of Public Health, School Health Services.  As food allergy educator he generously shares expertise to inform schools, restaurants and communities. Dr. Pistiner is content creator of the website, Allergy Home. He also has contributed a guest editorial to this website.  I’m delighted Dr. Pistiner agreed to be interviewed about his new food allergy education projects.

What prompted you to become a passionate food allergy educator and advocate? 
I see the world of food allergy from multiple personal and professional perspectives. I am father to a child with food allergy. I also have eosinophilic esophagitis and am a pediatric allergist. By drawing on these experiences, I can better support the community that I am very much a part of.

I interact with our health care system as parent/patient consumer and health care provider. I’ve also worked in a pediatric emergency department and am active in health care system improvement and delivery.  I see the good, bad, and ugly.  My professional, voluntary, and personal experiences opened my eyes to areas needing improvement.

What do you enjoy most about being a food allergy educator?
I’m fortunate to work and volunteer alongside some of the best and brightest. I enjoy learning from colleagues, publications and new information produced through clinical research trials. Subsequently, I attempt to organize information into useful resources. I love tailoring messages to my audience.  I try putting myself in their shoes to anticipate what’s needed, practical and beneficial.  I’ve spoken to thousands of school nurses, parents, children, educators, and healthcare professionals and love collaborating and learning from those I’m educating.

If we can help save one life or help one school better manage food allergies, it makes efforts worthwhile.  A comment on our AllergyHome Facebook page mentioned education we provided helped a family administer epinephrine to a child experiencing anaphylaxis. Positive feedback we’ve received about our training tools has significantly reinforced our work and mission.

What have you found to be major struggles for families coping with food allergy?
As parents of children with food allergy, we have a critical role in educating all that interact with and are responsible for the child’s care. Traditionally, we have done the heavy lifting surrounding this education. We’re constantly informing relatives, babysitters and friends but also teachers, administrators, restaurant staff, healthcare professionals, our child’s classmates and their parents. This responsibility becomes socially and logistically challenging. Relationship dynamics can be a barrier. Ensuring that all necessary prevention and preparedness skills are clearly and accurately taught, and at a time convenient for the audience, is tough.

By delivering evidence based resources in varied formats, parents can simply be “the messenger.”  If removed from relationship dynamics, they can conveniently pass along undisputed facts and tips to increase awareness in a specific setting. Sharing such objective resources helps establish baseline understanding that creates a foundation for future education.

How did the new handbook, Living Confidently with Food Allergy come about? 
We want children to be self-confident and proud of who they are and what they do. This becomes more important when a child has a food allergy.  Maintaining safety is necessary but so is their happiness.  Kids need to be kids. For over two years I’ve been honored to work on a North American collaborative effort led by Anaphylaxis Canada  to create Living Confidently with Food Allergy.  This free handbook is peer reviewed, evidence based, and offers tips to teach children. Our goal is to give parents another tool to help keep children safe while addressing emotional needs.

I was the pediatric allergist on a team with Jennifer LeBovidge, PhD, a child psychologist, and Anaphylaxis Canada team: Laura Bantock, Lauren James and Laurie Harada.

Where can people get Living Confidently with Food Allergy?
It’s designed for families, healthcare professionals and support groups and available online free via computer and smart phones at AllergyHome.org and Anaphylaxis Canada’s Newly Diagnosed Support Centre. It’s easy to browse. We also supply website links to other trusted resources. Ideally, all families can access trustworthy, practical tools to help guide food allergy management – especially important while awaiting an appointment with an Allergy team. We hope Primary Care, Allergy and Behavioral health care professionals share this handbook with patients.

You and your colleague, John Lee MD, create and produce high quality educational modules available free at the Allergy Home website. What do you hope to accomplish through this initiative?
We strongly feel education saves lives.  We’re serious about the AllergyHome mission to keep children with food allergies happy and safe. We are determined to play our part in stopping food allergy related deaths, especially in schools. Offering materials free helps achieve these goals.  Our target audience is not only families but health care professionals, schools, camps, restaurants and surrounding communities.  But even offering free materials may not motivate every school administrator or teacher, and especially families without food allergies, to get educated. Thus, we’ve been heavily engaged with regional and national organizations representing these groups to deliver this important information to the wider school population.

You recently began a Food Allergy & Anaphylaxis Awareness Campaign through Allergy Home that includes pop culture! What inspired this new development?
We want to engage teenagers, young adults and members of their community through humor and wit to reinforce serious and important messages. For example, we referenced Glee, Star Wars, and even Beyoncé!  We emphasize principles of prevention and preparedness that empower and educate. Humor and engaging images and topics can help messages sink in, especially to our most vulnerable population – teens and young adults. Graphics have been enthusiastically received and shared on Facebook.

You have been involved with school-based food allergy management programs. What do you think is paramount in creating positive collaborations between families and schools to achieve shared goals?
School communities often become hubs of our social life with children and families interacting together throughout school years. Those without food allergies can provide incredible support. Understanding and acceptance of necessary food allergy management strategies can help protect the health and self-esteem of those with the condition.

Unlike other chronic disorders, managing food allergies in school involves policies impacting everyone.  This may result in divisive disputes but usually rifts can be prevented or healed with awareness and education.

Schools are important targets for food allergy training. Not only for child safety but because they offer unique opportunities to spread awareness and education. By educating key players with tools to educate others, we may create “food allergy champions” that keep spreading awareness.  Helping food allergy awareness go viral!

Why do you support state legislation for stock epinephrine in schools?
This is a worthy and important cause.  When we lobby and support such legislation we are making a positive difference for children with food allergies and also helping protect those who aren’t yet diagnosed and may have a reaction. Close to 25% of epinephrine administrations in Massachusetts schools are to those without prior known history of potentially life threatening allergy.  We really are in this together.

You wrote an appealing children’s book, Everyday Cool with Food Allergies. What were your aims?
I teamed up with The No Biggie Bunch to write Everyday Cool with Food Allergies. It helps empower and educate children to play a role in managing food allergies. We review basic skills like hand washing, saying “no thank you”, notifying grownups, no sharing food or utensils, label reading, and readily accessible emergency medicine.  Additionally, we offer evidence-based facts for parents as rationale for daily food allergy management needs.

I enjoy teaching young children and doing so in age appropriate ways is critical.  They readily soak up information and pick up on language, tone and intensity.  Children believe grownups. Messages communicated to them about their food allergy become their reality. However, uncertainty, misinformation, and high emotion often permeate this topic. Children may base their reality on what they hear and fill in gaps with their own answers and assumptions. This can be much scarier than reality. For example, ask a child how long they think an auto-injector needle is.  Many will show you with their fingers it’s as long as the entire device! Most have no concept the needle is shorter than a dime.

What top 3 key concepts do you want children with food allergies to know?

• They are kids just like any other–they just have an important job to do.
• They need to respect themselves and be proud to take good care of themselves.
• They are not alone.

What do you think is vital for advancing food allergy initiatives involving healthcare professionals and stakeholders?
Collaboration is key. Our bottom line is a child’s health and happiness.  As a community of healthcare professionals and families we must keep our eye on the prize and move towards that goal.  No one person, group, system, organization, or even country can do this alone.  This is a big job. We each must recognize our part, our strengths and limitations and work alongside each other.  Then every aspect is addressed while working toward keeping children happy and safe.

Thank you Dr. Pistiner. Your dedication, skill and enthusiasm to improve food allergy education and awareness have been effective and refreshing!  Your exemplary efforts, including your novel approaches with social media integration, are appreciated.

Images courtesy of AllergyHome: www.allergyhome.org and/or its Facebook page.

Anne F. Russell, BSN, RN, AE-C has specialized in food allergy/anaphylaxis for almost 20 years. Her professional experience includes serving as President, Food Anaphylaxis Education, Inc., a state-wide nonprofit and Food Allergy Program Coordinator & Administrative Specialist in a university based Allergy & Immunology Division. As food allergy educator, she’s provided numerous presentations including at state & national conferences. She has initiated/collaborated on related state legislative policy. As a School Health Director, she coordinated individualized student health plans, trained staff in anaphylaxis prevention, identification and rescue and provided oversight. Anne served on FAAN (now FARE) Member Advisory Council, has collaborated with FAI (now FARE) and is recipient of FAAN Make a Difference Award. As food allergy/anaphylaxis clinical nurse educator & case manager, she provided these services in primary pediatric & allergy clinics. Anne is a Nursing faculty member at Spring Arbor University. She has created food allergy/anaphylaxis patient and staff education materials, coordinated related educational programs and has published on this topic in newsletters, blogs, and peer reviewed journal articles. Anne is also the parent of a beloved son who has food allergies. She posts about food allergy/anaphylaxis on Twitter as @AllergyEducator.