Better assessments needed to improve care for bullied children with food allergies
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Children with food allergies should be assessed for bullying through multi-item inventories so their caregivers can better protect them from physical, psychological and social dangers, according to a study.
According to the researchers, food allergy-related bullying not only may profoundly affect youth and parent psychosocial function, but it also may even endanger patients with food allergy through overt physical acts.
The researchers called for routine assessment of food allergy-related bullying among youth with food allergy given the consistent prevalence rates demonstrated in this and other studies and the significant safety and psychosocial impacts of food allergy-related bullying.
“This study was part of a larger research project looking at how many factors, including peer experiences, affect quality of life for children with food allergy and their parents. We were interested in learning about the best ways to ask about food allergy-related bullying within a diverse patient population,” Frances Cooke, BA, of the division of allergy and immunology at Children’s National Hospital, told Healio.
Published in the Journal of Pediatric Psychology, the study involved 121 youth aged 9 to 15 years (mean age, 11.8 years; standard deviation, 1.37 years; 60% boys) diagnosed with at least one of the top IgE-mediated food allergies (peanut, tree nut, cow’s milk, egg, wheat, soy, shellfish and fish) by an allergist as well as 121 primary caregivers (mean age, 43.6 years; standard deviation, 7.11 years; 90% mothers).
The youth completed the EMPOWER Program Survey of Children with Food Allergy (EMPOWER-Child), which assessed six victimization behaviors related to their allergy. The researchers also separately asked the youth if they had ever experienced any bullying related to their food allergy.
Although 31% (n = 37) said that they had experienced at least one of the six behaviors, only 17% (n = 20) said they had been bullied, teased or harassed about their food allergy in response to the separate question, indicating significant disagreement between the two assessment strategies (P = .001).
Four of the youth answered the separate question in the affirmative, although they did not say they experienced any of the specific behaviors described by EMPOWER-Child.
According to the results, 51% (n = 21) of the 41 youth who were bullied experienced overt physical bullying, including 32% (n = 13) having an allergen waved in their face, 10% (n = 4) having an allergen thrown at them and 5% (n = 2) having an allergen intentionally put in their food. Also, 10% (n = 4) were forced to eat an allergen, and 5% (n = 2) were purposefully touched with an allergen. One participant experienced an allergic reaction as a direct result of this bullying.
“Beyond the negative impact on emotional well-being, these bullying behaviors also cause concerns for child safety because allergen cross-contact can lead to allergic reactions,” Cooke said.
Also, 66% (n = 27) experienced nonphysical bullying, including verbal teasing (51%, n = 21), remarks or criticism about their allergy (20%; n = 8), and verbal threats or intimidation (15%; n = 6). Plus, 20% (n = 8) reported relational bullying such as rumors spread or people speaking behind their back (12%; n = 5) and being ignored or excluded due to their allergy (12%; n = 5).
The primary caregivers completed the EMPOWER Program Survey of Parents of a Child with Food Allergy (EMPOWER-Parent), with 12% (n = 15) saying their child had been bullied, 70% (n = 85) saying their child had not been bullied and 17% (n = 21) saying they were not sure.
“Parents were not always aware of food-allergy related bullying,” Cooke said. “Parents can ask direct questions about bullying experiences and more open-ended questions about peer experiences to encourage their child to open up about food allergy-related bullying.”
Calling these discrepancies between parent and child reports of food allergy-related bullying significant, Cooke said that children perhaps were reluctant to tell their parents about these incidents because they were embarrassed, they thought they wouldn’t be believed or that nothing could be done.
“Other reasons could be that parents have not asked about bullying or asked using a yes/no question that we’ve found to be less comprehensive,” Cooke said.
Also, 93% (n = 12) of the parents whose child had been bullied said their child told them about the bullying, and one was unsure if their child had told them. Additionally, 60% (n = 9) of these parents had to do something to stop the bullying, and 33% (n = 3) of them said their intervention helped stop the bullying from reoccurring.
“Allergists can play an important role in discussing peer experiences with children with food allergies during clinic visits. Our findings suggest that providers should ask both parents and children about food allergy-related bullying experiences,” said Cooke.
“Rather than asking one overarching yes/no question about bullying, allergists can ask about specific behaviors, like being threatened with an allergen, and open-ended questions, such as about lunch experiences and interactions with peers during social activities that involve food, to facilitate the conversation,” she added.
The researchers further noted that because food allergy-related bullying frequently occurred at school, personnel there can play a role in minimizing its dangers.
“Teachers, gym teachers, lunch monitors and other school staff who have insight into peer interactions should keep an eye out for the types of bullying behaviors described in this study and see if there are ways to minimize the differences between students with and without food allergies,” Cooke said. “For example, there may be ways to keep kids with food allergies safe at lunch that do not require them to sit separately from friends.”
For more information:
Frances Cooke, BA, can be reached at fcooke@childrensnational.org.
Perspective
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Scott H. Sicherer, MD, FAAP
It is not easy to live with life-threatening food allergies, but about 8% of children are doing so. Multiple studies show how this disease significantly negatively impacts health-related quality of life for children and their caregivers.
The primary management approach to food allergy is to avoid ingestion of the food. This means constant diligence: label reading, discussions with restaurants, queries of friends and family about ingredients, and concerns about cross-contact and hidden allergens. It also means being in a constant state of awareness to identify any allergic symptoms and to promptly treat any severe reactions, such as anaphylaxis, with self-injectable epinephrine.
Despite these impacts and feeling like one is living in a field of land mines, the person who has food allergies typically looks healthy. To the outside world of people not living with food allergies, this creates a huge disconnect. Parents and children living with this disease are constantly on guard, but they otherwise look just fine. The disability is not evident.
This may lead to intentional or unintentional provocations against those with food allergy. Adults may ask, “Is this really a big deal?” And children without food allergy may be curious about “Why can’t Jane eat what I can eat?” or “I eat peanut butter all the time, so how can this be a problem?”
With the imbalance of power of those who can vs. those who cannot eat, bullying can occur and seems to occur at double the typical rate among those with food allergies. No bullying should be tolerated, of course, and the emotional tolls can be extreme and long-lived, including depression, anxiety and suicidality. With food allergy, physical dangers also abound.
This study expands upon prior studies of food allergy-related bullying by using multiple tools for assessment of children and parents, such as the EMPOWER surveys, which I helped develop, and including a racially and economically diverse group of participants. The significant technical finding was that a higher rate of bullying was identified when multiple tools were used to query. In all, 34% of the children reported being bullied, and 51% of them described physical bullying that can include being forced to eat a food. One child even described an allergic reaction as a result. Importantly, only 12% of parents identified bullying.
This study and my team’s prior study on this topic suggest that parents may not be aware. In our studies, if parents knew, then the impact on quality of life for the child was lessened. This new study emphasizes that physicians, parents and other caregivers should query children who have food allergies about bullying, best by asking multiple questions, for example, by using expanded survey tools.
The implications are clear. Anti-bullying programs and increased education about food allergies should be implemented to ensure safety and inclusion. Counseling of parents, school staff and students is clearly needed to prevent and address bullying.
Reference:
Shemesh E, et al. Pediatrics. 2013;doi:10.1542/peds.2012-1180.
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