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Life-threatening allergies are difficult to live with, in more ways than one.
Having a life-threatening food allergy doesn’t just present a physical threat to life-it’s also a constant threat to mental health.
In a commentary published in the Annals of Allergy, Asthma, and Immunology,1 experts at Northwestern University Feinberg School of Medicine and the Ann and Robert H. Lurie Children’s Hospital of Chicago share perspectives on how clinicians can address both the medical and psychosocial challenges facing children-and families-impacted by life-threatening allergies.
Whereas allergists are well versed with the diagnosis and treatment of the conditions they manage, little research has gone into the mental and emotional burden these severe allergies can have on children and their families. In interviews conducted among high-volume allergists, the commentators reveal that flexibility, and a good relationship between the clinician and families, as well as consistent education are key to helping families cope with severe allergies. Identifying problems accepting and managing a diagnosis is just as important as prescribing therapies.
“Pediatricians who treat children with food allergies must think about quality of life issues as part and parcel of having and managing food allergies,” says Lisa S. Lombard, PhD, a clinical psychologist and research professor in the Center for Food Allergy and Asthma Research at Northwestern and co-author of the study. “Children and families want to get sound and clear medical information about avoiding food allergens and managing food allergy-related anxiety, challenging social situations, and uncertainty about newly emerging immunotherapies. Families often turn to the Internet and social media for this information, so pediatricians really need to be an accessible and up-to-date medical resource for these families.”
Knowledge is powerful
The report adds that although younger children don’t always have anxiety associated with their allergies, their families do. Going to school can be stressful, both for parents and children, particularly in terms of managing emergency allergic reactions and treatments. Anaphylactic reactions are a major source of anxiety, the commentators note, with auto-inject pens and the anaphylaxis itself stirring fear and uncertainty. However, the commentators suggest that reviewing these protocols and helping patients and their families feel ready to deal with these reactions can be a positive form of coping. Learning to properly administer epinephrine, and then doing it when needed, brings a sense of relief because the unknown was faced, and they feel better prepared to deal with the issue again in the future.
It’s important to recognize anxiety, as well as coping mechanisms, in both parents and children, the report notes. Education is a powerful tool in overcoming this anxiety, the team writes, adding that patients and parents who are misinformed about these allergies have a more difficult time coping. Clinicians may have to follow-up with these families regularly, offering simple and repetitive information that is easy to digest. Consider the developmental stage of the child and the coping ability of the family, the team suggests.
“Managing food allergies will look different at different ages of development, so families need to be flexible and innovate. The important element is finding a balance, so that avoidance and concern can be adaptive, rather than nonproductive,” Lombard says. “Children frequently absorb their parents’ level of anxiety, so address safety and allergen avoidance measures in developmentally appropriate ways that continue to give the message ‘We’ve got this!’ to the child. Advise families to look to evidenced-based resources. Find easy and accessible practices, such as role playing with your child, so they get more comfortable asking adults about who prepared the food, where it was made, and what the ingredients are.”
Lombard says her team is now using the interviews they conducted to help develop tried-and-true strategies that they can share with clinicians.
“We are using the research as a starting point for developing interventions to specifically meet the psychosocial coping needs of families with food allergies. Clearly, ongoing communication and support from physicians about psychosocial food allergy management is fundamental,” she says. “From a psychological perspective, good stress management skills such as guided imagery, mindfulness, and regulated breathing, can offer additional and welcomed support so parents and children can better use the problem-solving parts of the brain without extra worry and anxiety.”
Open communication and consistent education are the hallmarks of managing patient and family anxiety and coping skills when it comes to life-threatening food allergies. Lombard says she hopes the commentary will help clinicians understand the role they play, not just in treating these allergies but also to help children and their families live their best life with them.
“We hope that this report reminds physicians and health care providers who care for children and families with food allergies to consider the whole child,” she says. “Here are quality-of-life concerns that include worries and anxiety, social isolation, finding reliable and current treatment advice, and more. These issues are interrelated, so when they improve, overall patient outcomes can improve.”
1. Bozen A, Kanaley MK, Negris O, Gupta RS, Lombard L. Pediatric allergists’ perspectives on the psychosocial challenges of food allergy and factors that support coping. Ann Allergy Asthma Immunol. 2020;pii: S1081-S1206(20)30081-30088. Accessed April 8, 2020. https://www.annallergy.org/article/S1081-1206(20)30081-8/fulltext