When families come in for an oral food challenge at Children’s National Hospital in Washington, D.C., Dr. Linda Herbert asks them how they’re managing life with food allergies.
Often, the floodgates open, as parents pour out their stress and worry to the psychologist.
“I’ve attended hundreds of food challenges, and families are sometimes surprised that someone is asking how they are doing with food allergy, and acknowledging that this is hard and stressful,” Herbert says. Parents may “become tearful, or they start speaking and they don’t stop for 10 or 15 minutes, as they tell you about their journey.”
Their stories helped inspire a new study to gauge the psychological distress experienced by caregivers and food-allergic adults in 20 countries. The study also looks at how well families and adults with food allergies can access mental health services.
Food Allergy Anxiety: All Ages Issue
The study found psychological distress is widespread. More than 77 percent of parents and caregivers reported experiencing it in relation to their child’s food allergies. The worries don’t ease much for adults with food allergy – 68 percent said their food allergies caused stress and anxiety.
Their distress had several underlying causes. A big one was a fear of serious reactions: 74 percent of parents and 64 percent of food-allergic adults said they feared this. Worries about the possibility of a fatal reaction were also on their mind: 52 percent of adults and 56 percent of caregivers had that fear.
Thirty-four percent of food-allergic adults reported their anxiety was so bad they’d had panic attacks.
Part of the Global Access to Psychological Services for Food Allergy (GAPS) research, this study is based on questionnaires with over 1,300 food-allergic adults and 1,900 caregivers of children. Published in the journal Allergy, it involved participants in 20 countries. The majority of participants were from the United States, Australia, Brazil, Canada, France, Germany, Italy, Portugal, Spain and the United Kingdom.
Herbert and her colleagues now plan to use their findings to create an evidence-based, online mental health tool that families and food-allergic adults can use to help with coping.
“There is a huge, unmet need for mental health support, that isn’t just specific to the U.S. or the United Kingdom, but around the world,” says Herbert, PhD, the director of psychology research and clinical services in Children’s National’s Division of Allergy and Immunology.
“The large majority of patients and caregivers are experiencing distress. On the other hand, we are hearing they are not being screened for it, and there aren’t many resources for them to go to when they have this distress.”
What Worries Food-Allergic Adults
About 54 percent of adult participants with food allergy felt “sadness” about the impact of food allergies on their lives, with 51 percent saying the “loss of a normal life” bothered them.
Adults also felt anxiety about being able to avoid unsafe foods, with 60 percent saying they worried about this.
Navigating relationships, social situations and work while also dealing with food allergies were also sources of stress and anxiety.
Some specific concerns of food-allergic adults in the study:
• 51% feared trusting others to know what to do in an allergic reaction.
• 45% felt stress about telling others about their food allergies.
• 35% said allergy bullying was a source of distress.
• 30% worried food allergies would make it more difficult to find an intimate partner.
• 29% worried about finding or keeping a job where they felt allergy-safe.
Food Allergy Parents’ Trust Anxiety
Trusting others to care for their child was a major source of anxiety for parents and caregivers in the study. Seventy-one percent said this caused psychological distress.
Nearly 60 percent worried that people do not understand the seriousness of their child’s food allergy, despite trying to explain it to them.
“I hear a lot of stress about navigating multiple households, or multiple generations of caregivers who might not take the severity of food allergy very seriously,” Herbert says. “I also hear about stress related to starting daycare, or kindergarten, or summer camp.” As kids get older, she says worries extend to “studying abroad or disclosing their food allergy to somebody they might be interested in dating.”
Like food-allergic adults, parents also worried about the social impact. Concerns included:
• 42% worried about not being able to take part in social activities because of their child’s food allergies.
• 41% worried about social isolation due to food allergies.
• 34% feared they or their child would face allergy bullying.
About 51 percent of parents reported their children feel anxious and worried about their food allergies, too. Parents also experience sadness over the impact of food allergies on their lives, with 56 percent expressing this.
Worries Over Safe Foods and Diet
Food-allergic adults and parents both worry about accessing safe or allergen-free foods – 55 percent of adults and 48 percent of parents reported this.
Both groups were also concerned about eating a restricted diet. Forty-four percent of food-allergic adults and 33 percent of caregivers said this is a source of anxiety.
Epinephrine Auto-Injector Anxiety
In the survey, just over half of food-allergic adults reported a history of anaphylaxis. Yet, only 49 percent had an epinephrine auto-injector prescription.
Kids were more likely to have an auto-injector, with nearly 70 percent of caregivers reporting having a prescription. Nearly half of the children had experienced anaphylaxis.
Participants were surveyed about concerns related to epinephrine. Among adults with food allergy:
• 39% feared administering an epinephrine auto-injector.
• 38% worried about carrying the device.
• 30% reported worries about accessing an auto-injector.
• 18% reporting having needle phobia.
Among caregivers to kids with food allergies:
• 36% said they had anxiety about administering an auto-injector.
• 30% worried about carrying the device.
• 25% had concerns about accessing the medication.
Not Enough Mental Health Support
Screening for food allergy-related distress during an allergy appointment is uncommon in many countries. The study says about 21 percent of food-allergic adults, 12 percent of caregivers and 16 percent of their children have done such screening.
While there were regional variations, barriers to receiving mental health care included: cost, lack of insurance coverage, doctors not making a referral, lack of availability, time constraints, and childcare struggles. Stigma with being “labeled as having a mental health problem” was also a concern for some.
Only one-fifth of caregivers and adults across the globe had visited a mental health provider for food allergy-related distress. The study concludes that among caregivers, kids and adults living with food allergies, there is “a global unmet need for psychological support.”
How Allergists Can Help
The online mental health tool the researchers are developing will be based on techniques shown to be effective in treating anxiety disorders. Yet, allergists also have a role in helping their patients feel empowered to manage allergies, Herbert says.
Doctors should ask patients open-ended questions about the mental health impact of food allergies. These include: “How is food allergy fitting into your life? What is most challenging for you? Are there times you feel like you can’t participate because of food allergies?”
“There is such value to an allergist validating, listening and normalizing” food allergy-related anxiety, Herbert says. They should also identify mental health providers with knowledge of food allergies to refer their patients to.
How food-allergic adults and families manage food allergies is very individual, and must consider their priorities and lifestyle, Herbert says. For example, some food-allergic adults and families may be fine with avoiding restaurants. For others, never eating out would be a major inconvenience and loss.
If individuals or families are skipping activities or social events that are important to them, or if they are experiencing a lot of anxiety around participating, it can be a sign they need more support.
In whatever they choose, “we want them to still do the things that matter to them,” Herbert says. “If they plan to send their child to public school, we want them to still be able to do that. If they go on a special family holiday vacation, or there are family rituals or cultural traditions that matter to them, we want them to be able to do that.”
Related Reading:
Air Travel with Allergies Survey: From Anxiety to Crew Issues
Allergic Living’s Food Allergy Anxiety Guide
