We have no potential conflicts to report regarding food allergies. Jennifer Moyer Darr, LCSW

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1 Jennifer Moyer Darr, LCSW We have no potential conflicts to report regarding food allergies Melissa Korenblat-Hanin, ACSW, LCSW Learning Objectives: Gupta et al., 2011 Describe the psychosocial dynamics of living with food allergies: challenges, emotions, and accomplishments Discuss approaches that build and enhance stability, security, and sensibility using challenging case scenarios Branum & Lukacs, 2008 Identify successful resources for assisting the food allergic patient and family Living With Food Allergies Feels Like You Are Navigating Through An Obstacle Course Hurdles, Challenges, Surprises, & Uncertainties How Do You Promote Strength Vs. Fear? Establishing an atmosphere of confidence & trust Vigilance How Do You Tackle Uncertainty & Insecurity 1

2 Frustration Anger Sadness Fear Overwhelmed Worried Depression Shock Astonished Uncertainty Unhappy Denial Anxious Confused Stressed Guilt Powerlessness It is imperative that health care professional not only understand the biomedical implications of the problem, but also the overall psychosocial impact that may be experienced after diagnosis. (Broome-Stone S. B., The Psychosocial Impact of Life-Threatening Childhood Food Allergies. Pediatr Nurs, 2012;38(6): ) Excessive Demands Fear of Dying Financial Burden Uncertainty Living in a state of sustained uncertainty. Ambiguity confusion and disorganization within the family system (Cohen 1993) Marital Strain Interference with Routine Social & Emotional Isolation Navigating Schools, Travel, Eating Out Living with Risk Living with Fear (Broome-Stone S. B., The Psychosocial Impact of Life-Threatening Childhood Food Allergies. Pediatr Nurs, 2012;38(6): ) (Broome-Stone S. B., The Psychosocial Impact of Life-Threatening Childhood Food Allergies. Pediatr Nurs, 2012;38(6): ) Promotes Anxiety & Fear Not eating or missing special events Management of the food allergy Depression Social Isolation Psychological Distress Maladaptive coping responses that interfere with the psychological and social development and optimal functioning of family members Impact on Relationships (Klinnert M, Robinson J. Addressing the Psychological Needs of Families of Food Allergic Children. Current Allergy & Asthma Reports, 2008, 8: ) 2

3 The Food Allergy QoL Parental Burden questionnaire (FAQL-PB) measures the parental burden associated with having a food allergic child. Validated instruments allowing parents to report on QoL in the child from the child s perspective and for children and teenagers to report on their own QoL. Cohen BL,Noone S, Munoz-Furlong A,Sicherer SH.Development of a questionnaire to measure quality of life in families with a child with food allergy.j Allergy Clin Immunol2004;114: DunnGalvin A,De BlokFlokstra BM,Burks AW,Dubois AE, Hourihane JO. Food allergy QoL questionnaire for children aged 0 12years: content, construct, and cross-cultural validity.clin Exp Allergy2008;38: Flokstra-de Blok BM,DunnGalvin A,Vlieg-Boerstra BJ, Oude Elberink JN,Duiverman EJ, Hourihane JOetal. Development and validation of the self-administered Food Allergy Quality of Life Questionnaire for adolescents.j Allergy Clin Immunol2008;122: FAQoL-PB Disease specific QoL by Cohen et al 17 item instrument Focused on emotional responses Sadness Worry about future Helplessness General anxiety Family functioning impacted Family/Social activities School/camp Meal preparation time Health concerns Emotional issues Families whose child had 3 or more food allergies & if there was an anaphylactic reaction Cohen B, Noone S, Munoz-Furlong A, et al,: Development of a questionnaire to measure quality of life in families with a child with food allergy. J Allergy Clin Immunol2004, 114: Assess Impact of Food Allergy on Daily Activities 87 Families 70% had significant impact -Aspects of daily life were affected & family meal preparation 79% -Significant impact of going to restaurants 10% -No engaging in activities with relatives 11% -No play dates at friends houses 10% - Missed birthday parties 10% -Home schooled Bollinger MB, Dahlquist LM, Mudd K, Sonntag C, Dillinger L, McKenna K. The impact of food allergy on the daily activities of children and their families. Ann Allergy Asthma Immunol. 2006; 96: Many studies have shown that food allergies have a significant effect on the psychosocial wellbeing of children with food allergies and their families Parents of a child with a food allergy may have constant fear about the possibility of a lifethreatening reaction and stress from constant vigilance needed to prevent a reaction. They have to trust their child to the care of others, make sure their child is safe outside the home, and help their child have a normal sense of identity. Centers for Disease Control and Prevention. Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs. Washington, DC: US Department of Health and Human Services; Children with food allergies may also have constant fear and stress about the possibility of a life threatening reaction. The fear of ingesting a food allergen without knowing it can lead to coping strategies that limit social and other daily activities. Children can carry emotional burdens because they are not accepted by other people, they are socially isolated, or they believe they are a burden to others. They also may have anxiety and distress that is caused by teasing, taunting, harassment, or bullying by peers, teachers, or other adults. School and ECE program staff must consider these factors as they develop plans for managing the risk of food allergy for children with food allergies. Centers for Disease Control and Prevention. Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs. Washington, DC: US Department of Health and Human Services; Age 7: Increased Anxiety Cognitive ability to comprehend serious nature Adolescence Most Common among teenagers and young adults Risk taking, faulty perceptions of risk Internet Based Questionnaire yr olds 54% of 174 responses Purposefully ate tiny amount of food containing allergen Previous exposure w/out reaction Judgment Wanting to eat the food 61% - carried epi (depending on situation varied) Sampson M, Munoz-Furlong A, Sicherer S: Risk-taking and coping strategies of adolescents and young adults with food allergy. J Allergy Clin Immunol 2006, 117: Klinnert M, Robinson J. Addressing the Psychological Needs of Families of Food Allergic Children. Current Allergy & Asthma Reports,2008, 8:

4 Chronic illness is a risk factor for developing anxiety Anxiety symptoms are prevalent in children with chronic illness Concurrent disorders (medical and anxiety) seem to result in greater impairment than either an anxiety disorder or medical condition alone. Ramsawh, H., et al The burden of responsibility that food allergy exerts upon individuals and their families can have a significant influence on QoL. Primeau etal. found that peanut allergy is a condition, which forces parents to exert extreme dietary vigilance and face continuous uncertainty over the possibility of accidental exposures. Avoidance of food allergens requires constant alertness and is complicated as the presence of allergens is not always obvious. In a study of community allergic reactions to foods, 60% of participants were aware that they had a food allergy, yet over 50% were unaware that the food they were consuming contained the allergen. This reflects the difficulties associated with total allergen avoidance, and the burden taken on by those who see themselves as responsible for that avoidance. Study by Deena Mandell, et al 2002 discusses how families describe their adaptation to living with anaphylaxis in their child. Initial high anxiety proved motivating towards seeking education and resources. Primeau MN,Kagan R,Joseph L,Lim H,Dufresne C,Duffy Cetal.The psychological burden of peanut allergy as perceived by adults with peanut allergy and the parents of peanut-allergic children.clin Exp Allergy2000;30: Uguz A,Lack G,Pumphrey R,Ewan P,Warner J,Dick Jetal.Allergic reactions in the community: a questionnaire survey of members of the anaphylaxis campaign. Clin Exp Allergy2005;35: Anxiety Among Parents of Children With Food Allergies Anxiety Patterns Among Parents of Children With Food Allergies Settling Down Time Time Acute Stressor Resurgent Stressor Acute Stressor PTSD Chronic Anxiety Settling Down Mary Klinnert PhD unpublished talk 2008 Mary Klinnert PhD unpublished talk

5 Lack of public understanding/cooperation Inconsistent medical information Mislabeled and/or inconsistently labeled foods Multiple food allergies Mandell, 2002 Shock Denial Anger Bargaining Depression Guilt Acceptance Anaphylaxis Death Restaurants Vacations Grocery Store Food Labels Holidays Camp Field Trips PROBLEM-FOCUSED STRATEGY Define problem Seek potential solutions Learn new skills to deal New methods to manage Lazarus & Folkman, 1984 (Broome-Stone S. B., The Psychosocial Impact of Life-Threatening Childhood Food Allergies. Pediatr Nurs, 2012;38(6): ) EMOTION-FOCUSED STRATEGY Distance themselves from stress by minimization Avoidance Self-blame Punishment Drug/alcohol use Exercise Relaxation techniques Gillespie, 2002 Wiser /Better Choices Building Vigilance Address Fears Empowers Promote Reassurance Confidence Resources Support Security 5

6 Parents Grandparents Peers School Child Care Providers School Personnel Parties Sleepovers Holidays Restaurants Grocery Stores Camp Babysitters Celebrations Travel RESTAURANTS Calling Ahead Speaking with manager & waiter - communicate clearly View ingredient list Oil What gets fried together Cross Contamination Preparation Products made outside the kitchen Carrying Epi Pen Avoiding risky environments (Chinese restaurants if peanut allergy exists) Restaurant Suggestions Chef card (FAAN) OTHER LOCATIONS Speak with Hostess Contribute items Have safe food alternatives.bring safe food with you Provide education List of food allergies Preparation Cross Contamination Food Allergy Action Plan Picture Epi Pen (2 dual boxes) What Where When Proper training annually Meet with School Personnel and Team Recognizing symptoms of allergic reaction and what to do Letter to Families..communication with parents Education/Awareness Special Programming/Celebrations/Projects Substitute Teachers / aides Not using food as incentive or reward Lunch / Snacks hand washing, not trading or sharing Holiday Planning/Parties Field Trips Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs On October 30, 2013, the Centers for Disease Control & Prevention (CDC) published Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs -the first national comprehensive guidelines for school food allergy management. This act is designed to improve food safety in the United States by shifting the focus from response to prevention. 6

7 Many schools and ECE programs have implemented some of the steps needed to manage food allergies effectively. Yet systematic planning for managing the risk of food allergies and responding to food allergy emergencies in schools and early care and education (ECE) programs remain incomplete and inconsistent. Studies show that 16% 18% of children with food allergies have had a reaction from accidentally eating food allergens while at school. In addition, 25% of the severe and potentially life-threatening reactions (anaphylaxis) reported at schools happened in children with no previous diagnosis of food allergy. Centers for Disease Control and Prevention. Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs. Washington, DC: US Department of Health and Human Services; Ensure the daily management of food allergies in individual children. 2. Prepare for food allergy emergencies. 3. Provide professional development on food allergies for staff members. 4. Educate children and family members about food allergies. 5. Create and maintain a healthy and safe educational environment. Centers for Disease Control and Prevention. Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs. Washington, DC: US Department of Health and Human Services; PresidentObama signs the School Access to Emergency Epinephrine Act in the Oval Office of the White House in Washington, D.C., on Nov. 13, 2013 Thirty states now have laws or guidelines in place allowing schools to stock undesignated epinephrine auto-injectors, but only four states (Maryland, Nebraska, Nevada and Virginia) currently require it. 7

8 Reading Labels Carefully and continually / Ingredients change Varying product size different ingredients Being smart when unsure Purchasing only with label FARE alerts Cosmetics, lotions, bath products List of food allergies in language of country Letter for flying with medication Notifying airline of food allergy prior and day of Travel with allergy-friendly food and medication with you Having a food allergy management plan Psychosocial parameters Know emergency plan Having and carrying at all times epinephrine Having and knowing emergency numbers Recognizing symptoms early & responding quickly Communicating effectively Not trading food Learn how to read labels Having a responsible adult in every environment Maintain best achievable asthma control VIGILANCE Newsletters Magazines Support Groups Internet Blogs Chats Education Forum E-newsletters Counseling Education Psychoeducational (Klinnert M. & Robinson J.) Dietician FARE: Food Allergy Resource & Education [The Food Allergy and Anaphylaxis Network (Foodallergy.org) and The Food Allergy Initiative merged] Dedicated to Food Allergy Research and Education with the mission of ensuring the safety and inclusion of individuals with food allergies while relentlessly seeking a cure. FARE combines FAAN s expertise as the most trusted source of information, programs and resources related to food allergies with FAI s leadership as the world s largest private source of funding for food allergy research. National Institute of Allergy and Infectious Diseases: Guidelines for the Diagnosis and Management of Food Allergy in the United States [ Asthma and Allergy Foundation of America (aafa.org) & Kids With Food Allergies is a national nonprofit food allergy organization dedicated to fostering optimal health, nutrition, and well-being of children with food allergies by providing education and a caring support community for their families and caregivers. (kidswithfoodallergies.org) Allergy & Asthma Network, Mothers of Asthmatics ( Why Risk It? A Canadian food allergy website for teens ( 8

9 Vigilance Prepared Epi Pen Education Beliefs Attitude Knowledge Building Navigational Skills Avery NJ, King RM, Knight S, Hourihane JO, Assessment of Quality of Life in Children with Peanut Allergy. Pediatr Allergy Immunol, 2003; 14: Bollinger MB, Dahlquist LM, Mudd K, Sonntag C, Dillinger L, McKenna K. The Impact of Food Allergy on the Daily Activities of Children and their Families. Ann Allergy Asthma Immunol. 2006; 96: Branum, A.M. & Lukacs, S.L. (2008). Food allergy among U.S. children: Trends in prevalence and hospitalizations. Hyattsville, MD: National Center for Health Statistics. Broome-Stone S. B., The Psychosocial Impact of Life-Threatening Childhood Food Allergies. Pediatr Nurs, 2012;38(6): Chisolm, S, Taylor, S, Balkrishman, R and Feldman, S. Written Action Plans:Potential for improving outcomes in children with atopic dermatitis. Journal of the American Academy of Dermatology vol 59: Centers for Disease Control and Prevention. Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs. Washington, DC: US Department of Health and Human Services; Cohen B, Noone S, Munoz-Furlong A, et al,: Development of a Questionnaire to Measure Quality of Life in Families with a Child with Food Allergy. J Allergy Clin Immunol, 2004, 114: Cohen, M. (1993). The unknown and the unknowable: Managing sustained uncertainty. Western Journal Nursing Research, 15(1), Cummings, A. J., Knibb, R. C., King, R. M. and Lucas, J. S. (2010), The psychosocial impact of food allergy and food hypersensitivity in children, adolescents and their families: a review. Allergy, 65: doi: /j x DunnGalvinA, De BlokFlokstra BM, Burks AW, Dubois AE, Hourihane JO. Food allergy QoL questionnaire for children aged 0 12 years: content, construct, and cross-cultural validity. Clin Exp Allergy2008;38: FAAN Website What you should know about living with food allergy. Flokstra-de Blok BM, DunnGalvin A, Vlieg-Boerstra BJ, Oude Elberink JN, Duiverman EJ, Hourihane JO et al. Development and validation of the selfadministered Food Allergy Quality of Life Questionnaire for adolescents. J Allergy Clin Immunol2008;122: Gandi B, Cheeck S, Campo J. Anxiety in the pediatric medical setting: Child Adolescent Psychiatric Clin N Am Gupta, R.S., et al. The Prevalence, severity, and distribution of childhood food allergy in the United States. Pediatrics, e9-e17. doi: /peds Lewis Jones, S. Quality of Life and Childhood Atopic Dermatitis: the misery of living with childhood eczema. Int J Clin Pract, August b2006, 60, 8, Kelsay K. Psychological Aspects of Food Allergy. Current Allergy and Asthma Reports, 2003, 3: Klinnert M, Robinson J. Addressing the Psychological Needs of Families of Food Allergic Children. Current Allergy & Asthma Reports,2008, 8: Klinnert, M Helping Families Cope with Children s Food Allergies unpublished talk Mandell, D Families Coping With a Diagnosis of Anaphylaxis in a Child: A qualatative study of informational and support needs ACI International, 14/3 (2002). Muñoz-Furlong A, Noone SA, Sicherer SH. Impact of Food Allergy on Quality of Life. Ann Allergy Asthma Immunol. 2001; 87 : Primeau MN, Kagan R, Joseph L, Lim H, Dufresne C, Duffy C, Prhcal D, Clarke A. The Psychological Burden of Peanut Allergy as Perceived by Adults with Peanut Allergy and the Parents of Peanut Allergic Children. Clin Exp Allergy, 2000; 30: Ramsawh H, Chavira D, Stein M. The Burden of anxiety disorders in pediatric medical settings: prevalence, phenomenolgy and a research agenda. Arch Pediatric Adolescent Medicine 2010; 164: Sampson M, Munoz-Furlong A, Sicherer S: Risk-taking and Coping Strategies of Adolescents and Young Adults with Food Allergy. J Allergy Clin Immunol,2006, 117: Teufel M, Biedermann, T, Rapps N, Hausteiner C, Henningsen P, Erick P, Zipfel S. Psychological Burden of Food Allergy. World J. Gastroenterol,2007 July 7; 13(25): Uguz A, Lack G, Pumphrey R, Ewan P, Warner J, Dick J et al. Allergic reactions in the community: a questionnaire survey of members of the anaphylaxis campaign. Clin Exp Allergy 2005;35: