Jennifer LeBovidge, Ph.D.Jennifer LeBovidge, Ph.D.Psychologist, Children’s Hospital BostonPsychologist, Children’s Hospital Boston

April 13April 13thth, 2012, 2012

The Psychosocial ImpactThe Psychosocial Impactof Food Allergy:of Food Allergy:

Supporting Students Supporting Students from Pre-K to 12from Pre-K to 12

Clinical Features of Food Clinical Features of Food AllergiesAllergies

Abnormal Abnormal immuneimmune response to a food protein (vs. food response to a food protein (vs. food intolerance)intolerance)

Types of exposure: ingestion, skin contact, inhalationTypes of exposure: ingestion, skin contact, inhalation Accidental exposure may result in a range of minor to Accidental exposure may result in a range of minor to

potentially fatal episodes (anaphylaxis)potentially fatal episodes (anaphylaxis) Swelling of tongue and throatSwelling of tongue and throat Difficulty breathingDifficulty breathing HivesHives Vomiting/abdominal cramps/diarrheaVomiting/abdominal cramps/diarrhea Drop in blood pressureDrop in blood pressure Loss of consciousnessLoss of consciousness

Common Food AllergensCommon Food Allergens 90% of all food-allergic reactions caused by:90% of all food-allergic reactions caused by:

MilkMilk EggEgg PeanutPeanut Tree nut (e.g., walnut, cashew, almond, pecan)Tree nut (e.g., walnut, cashew, almond, pecan) FishFish ShellfishShellfish SoySoy WheatWheat

Prevalence and EpidemiologyPrevalence and Epidemiology 12 million Americans affected12 million Americans affected 8% of children8% of children Increasing prevalence: studies suggest true rise over Increasing prevalence: studies suggest true rise over

past 10-20 years, but don’t know whypast 10-20 years, but don’t know why Hygiene hypothesis (faulty regulation of immune Hygiene hypothesis (faulty regulation of immune

system linked to decreased exposure to system linked to decreased exposure to microorganisms)microorganisms)

Delayed introduction of foods Delayed introduction of foods Food processing practicesFood processing practices

Course and Management of Course and Management of Food AllergiesFood Allergies

No cure for food allergies (but promising clinical trials – No cure for food allergies (but promising clinical trials – oral immunotherapy/desensitization)oral immunotherapy/desensitization)

Many people outgrow food allergies, although peanuts, Many people outgrow food allergies, although peanuts, nuts, fish, and shellfish are often life-long allergiesnuts, fish, and shellfish are often life-long allergies

Management involves:Management involves: Strict avoidance of food allergensStrict avoidance of food allergens Emergency management of reactions/ready Emergency management of reactions/ready

availability of self-injectable epinephrine (EpiPen®)availability of self-injectable epinephrine (EpiPen®)

Translating Management into Translating Management into Daily LifeDaily Life

You can’t always know what’s in a food by looking at it:You can’t always know what’s in a food by looking at it: Label reading, asking about ingredientsLabel reading, asking about ingredients

Sometimes food contains things it’s not supposed toSometimes food contains things it’s not supposed to Avoiding cross-contact through food prep/cleaningAvoiding cross-contact through food prep/cleaning

Sometimes what other people eat mattersSometimes what other people eat matters Cross-contact, kissing (developmental risk factors)Cross-contact, kissing (developmental risk factors)

Sometimes non-food items contain foodSometimes non-food items contain food Epinephrine is only helpful if:Epinephrine is only helpful if:

It is close by (always, not just during mealtimes)It is close by (always, not just during mealtimes) Someone knows how to administer it (lots of teaching)Someone knows how to administer it (lots of teaching)

ALWAYS: inform and teach othersALWAYS: inform and teach others

Broad Impact on Quality of LifeBroad Impact on Quality of Life Meal preparationMeal preparation Eating outside the home/restaurantsEating outside the home/restaurants Family activities/holidaysFamily activities/holidays Playdates/partiesPlaydates/parties SchoolSchool Extracurriculars/sports/campExtracurriculars/sports/camp Other caregivers: babysitters, relativesOther caregivers: babysitters, relatives

Bollinger et al., 2006; Cohen et al., 2004; Springston, 2010Bollinger et al., 2006; Cohen et al., 2004; Springston, 2010

Putting Child Coping Putting Child Coping in a Contextin a Context

Children are resilientChildren are resilient Predictable psychosocial challenges and developmental Predictable psychosocial challenges and developmental

transitionstransitions Awareness/knowledge can help us support adaptive Awareness/knowledge can help us support adaptive

copingcoping

Coping with DifferencesCoping with Differences Younger childhood Younger childhood – may be more concrete (that food looks – may be more concrete (that food looks

good and I want it)good and I want it) Middle childhood Middle childhood – “special” to “different” transition– “special” to “different” transition

It doesn’t matter how beautiful the special cupcake is, if it’s It doesn’t matter how beautiful the special cupcake is, if it’s not the same as what everyone else hasnot the same as what everyone else has

Am I the reason my class gets fruit at the Halloween party and Am I the reason my class gets fruit at the Halloween party and the other class gets cookies?the other class gets cookies?

Mixed feelings about nut-free tableMixed feelings about nut-free table Adolescence Adolescence – don’t want allergies to be a “big deal”– don’t want allergies to be a “big deal”

Embarrassed to ask about ingredientsEmbarrassed to ask about ingredients Don’t want to carry EpiPen aroundDon’t want to carry EpiPen aroundDunnGalvin et al., 2009 DunnGalvin et al., 2009

Risk-Taking in AdolescenceRisk-Taking in Adolescence Increased risk for fatal reactionsIncreased risk for fatal reactions Internet-based study of 174 13-21 year-oldsInternet-based study of 174 13-21 year-olds

54% admit to eating at least a tiny bit of food known 54% admit to eating at least a tiny bit of food known to contain an allergento contain an allergen

61% always carry self-injectable epinephrine61% always carry self-injectable epinephrine 58% avoid foods with “may contain” labeling58% avoid foods with “may contain” labeling 39% report not all of their friends know about allergies39% report not all of their friends know about allergies

Sampson, Munoz-Furlong, & Sicherer, 2006Sampson, Munoz-Furlong, & Sicherer, 2006

What Influences Risk-Taking?What Influences Risk-Taking? Embarrassed to ask about ingredients (don’t want to Embarrassed to ask about ingredients (don’t want to

make a “big deal” about food allergies, everyone’s make a “big deal” about food allergies, everyone’s looking at me)looking at me)

Have been teased about allergies in the pastHave been teased about allergies in the past Hanging out with friends who are eating the foodHanging out with friends who are eating the food Awkward to carry the EpiPen (lower rates with tight Awkward to carry the EpiPen (lower rates with tight

clothes, social activities, harder for boys)clothes, social activities, harder for boys) ““May contain” risk perceived as low, “manufacturers just May contain” risk perceived as low, “manufacturers just

covering their backs”covering their backs” Developmental piece (“invincibility”)Developmental piece (“invincibility”)

Sampson et al., 2006; Akeson, Worth, & Sheikh, 2007Sampson et al., 2006; Akeson, Worth, & Sheikh, 2007

Bullying and TeasingBullying and Teasing Recent study: 35% of those 5 years and older had Recent study: 35% of those 5 years and older had

experienced food allergy-related bullying/teasingexperienced food allergy-related bullying/teasing 86% multiple incidents86% multiple incidents 82% occurred at school82% occurred at school 65% verbal teasing65% verbal teasing 57% physical events57% physical events

Lieberman et al., 2010Lieberman et al., 2010

Anxiety and Food AllergiesAnxiety and Food Allergies Anxiety about accidental ingestion of food, resulting in Anxiety about accidental ingestion of food, resulting in

severe reactionsevere reaction PerceivedPerceived risk is a stronger predictor of anxiety than risk is a stronger predictor of anxiety than

anaphylaxis historyanaphylaxis history Fear of the unknown can be powerfulFear of the unknown can be powerful

What would happen if I had a reaction? Would I die?What would happen if I had a reaction? Would I die? What would the EpiPen be like? What would the EpiPen be like?

UncertaintyUncertainty Possibility of accidental ingestion even when allergy Possibility of accidental ingestion even when allergy

management strategies are followedmanagement strategies are followed Unpredictability around severity of symptoms following Unpredictability around severity of symptoms following

exposure to a foodexposure to a food Lack of certainty regarding the level of risk posed by Lack of certainty regarding the level of risk posed by

certain situations and foods certain situations and foods Lack of awareness on the part of othersLack of awareness on the part of others

Dunn Galvin & Hourihane, 2009Dunn Galvin & Hourihane, 2009

Changes in Middle ChildhoodChanges in Middle Childhood Increased anxiety and uncertainty:Increased anxiety and uncertainty:

Greater cognitive understanding of risksGreater cognitive understanding of risks It’s not black and white (you can follow the rules and It’s not black and white (you can follow the rules and

still have a reaction, parents can’t guarantee safety)still have a reaction, parents can’t guarantee safety) More responsibility for allergy managementMore responsibility for allergy management Trust issues (depending on others, variability in Trust issues (depending on others, variability in

awareness/understanding of allergies)awareness/understanding of allergies)

Klinnert & Robinson, 2008; DunnGalvin et al., 2009Klinnert & Robinson, 2008; DunnGalvin et al., 2009

Parental AnxietyParental Anxiety Underlying fear of anaphylaxis resulting in deathUnderlying fear of anaphylaxis resulting in death Some anxiety is adaptive (“Goldilocks principle”)Some anxiety is adaptive (“Goldilocks principle”) Anxiety typically decreases as routines established, Anxiety typically decreases as routines established, BUTBUT Anxiety may increase with:Anxiety may increase with:

New incidents of accidental exposure, reactionsNew incidents of accidental exposure, reactions Developmental transitions: increased child management Developmental transitions: increased child management

responsibilities; reliance on third parties (day care, teachers, responsibilities; reliance on third parties (day care, teachers, babysitters, camp, cafeteria staff)babysitters, camp, cafeteria staff)

As children/parents successfully partner with schools, anxiety will As children/parents successfully partner with schools, anxiety will be reducedbe reduced

Mandell et al., 2002Mandell et al., 2002

How do we use this knowledge How do we use this knowledge to create a safe, supportive, to create a safe, supportive,

positive school experience for positive school experience for children with food allergies?children with food allergies?

CommunicationCommunication Partner with the family to develop an allergy management plan Partner with the family to develop an allergy management plan

that that everyoneeveryone feels comfortable with feels comfortable with Communicate Communicate ahead of time ahead of time about any classroom activities about any classroom activities

involving food (if such activities are permitted)involving food (if such activities are permitted) So child will be safeSo child will be safe So child will feel prepared and includedSo child will feel prepared and included Always think—is food necessary here?Always think—is food necessary here?

Check in periodically to make sure plans are workingCheck in periodically to make sure plans are working Ask parents/nurse if there are questions about the planAsk parents/nurse if there are questions about the plan Communicate with parents of children Communicate with parents of children withoutwithout allergies about allergies about

food policies (clear messages from the school increase safety, food policies (clear messages from the school increase safety, take responsibility off individual families)take responsibility off individual families)

Supporting ChildrenSupporting Children Help children feel prepared:Help children feel prepared:

Visit school/learn procedures ahead of timeVisit school/learn procedures ahead of time Introduce the “go-to” people for safetyIntroduce the “go-to” people for safety

Think about messages you are sendingThink about messages you are sending Calm, matter-of-fact focus on consistent safety routines = Calm, matter-of-fact focus on consistent safety routines =

food allergy is manageablefood allergy is manageable Be mindful of tone & language (“life threatening”)Be mindful of tone & language (“life threatening”)

Never make children feel responsibleNever make children feel responsible Respect “no thank you” or “I need to ask my parent”Respect “no thank you” or “I need to ask my parent” Be aware of potential for bullyingBe aware of potential for bullying Calm response in emergency situationCalm response in emergency situation

Processing What Happened Processing What Happened After a ReactionAfter a Reaction

Importance of communication with the familyImportance of communication with the family Experience for learningExperience for learning

What went right (emergency plan worked!)What went right (emergency plan worked!) Improvement for next timeImprovement for next time

No one is angry (raised voices)No one is angry (raised voices) Correct misperceptions/clarity on what is safeCorrect misperceptions/clarity on what is safe

Educating Peers About Educating Peers About Food AllergiesFood Allergies

More peers know, more supportive can beMore peers know, more supportive can be ““Bottom-up” approachBottom-up” approach Consider classroom teaching (Understanding Consider classroom teaching (Understanding

Disabilities, nurse, teacher)Disabilities, nurse, teacher) Some children may want to be a part of thisSome children may want to be a part of this Available videos, booksAvailable videos, books Start the education process early, so it’s routine for Start the education process early, so it’s routine for

peers, too (not a “big deal” in teen years)peers, too (not a “big deal” in teen years)

What Peers Should KnowWhat Peers Should Know Simple definition of food allergySimple definition of food allergy How ingredients “hide” in foodsHow ingredients “hide” in foods What symptoms may look likeWhat symptoms may look like Common allergens Common allergens How they can help (no sharing/ trading foods, hand How they can help (no sharing/ trading foods, hand

washing, bring nut-free lunch—think about specific washing, bring nut-free lunch—think about specific classroom rules)classroom rules)

What to do in an emergency What to do in an emergency Good friends don’t tease or try to get a child with Good friends don’t tease or try to get a child with

allergies to eat foods they shouldn’tallergies to eat foods they shouldn’t Food allergy is manageable!Food allergy is manageable!

Signs Professional Support Signs Professional Support May be HelpfulMay be Helpful

Chronic stress and fear (vs. short-lived stress related to Chronic stress and fear (vs. short-lived stress related to key events)key events)

Changes in eating patterns (e.g., not eating lunch)Changes in eating patterns (e.g., not eating lunch) Avoidance behaviors that limit the child (vs. adaptive Avoidance behaviors that limit the child (vs. adaptive

caution that promotes safe participation in activities)caution that promotes safe participation in activities) Worry interfering with daily activitiesWorry interfering with daily activities Reassurance is never enough (repeated safety Reassurance is never enough (repeated safety

questions)questions) Symptoms generalizing to more situationsSymptoms generalizing to more situations

ResourcesResources Massachusetts guidelines for managing food allergies in Massachusetts guidelines for managing food allergies in

schools (http://www.doe.mass.edu/cnp/allergy.pdf)schools (http://www.doe.mass.edu/cnp/allergy.pdf) Food Allergy and Anaphylaxis Network Food Allergy and Anaphylaxis Network

(www.foodallergy.org)(www.foodallergy.org) Asthma and Allergy Foundation of America (AAFA) Asthma and Allergy Foundation of America (AAFA)

(www.aafa.org)(www.aafa.org) AAFA, New England Chapter (support groups; AAFA, New England Chapter (support groups;

www.asthmaandallergies.org) www.asthmaandallergies.org) Food Allergy Initiative (www.faiusa.org)Food Allergy Initiative (www.faiusa.org) Anaphylaxis Canada (www.anaphylaxis.org) Anaphylaxis Canada (www.anaphylaxis.org) Why Risk It? (for teens, www.whyriskit.ca)Why Risk It? (for teens, www.whyriskit.ca) Allergy Home (info, slideshows; www.allergyhome.org)Allergy Home (info, slideshows; www.allergyhome.org) Books (www.nobiggiebunch.com)Books (www.nobiggiebunch.com)