Jennifer LeBovidge, Ph.D. Psychologist, Childrens Hospital Boston April 13 th, 2012 The Psychosocial...
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Transcript of Jennifer LeBovidge, Ph.D. Psychologist, Childrens Hospital Boston April 13 th, 2012 The Psychosocial...
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)