When families come for oral food testing at Children’s National Hospital in Washington, DC, Dr. Linda Herbert asks them how they are coping with their food allergies.

The floodgates often open when parents confide their stress and worries to the psychologist.

“I’ve participated in hundreds of food trials and families are sometimes surprised that someone asks them how they’re doing with their food allergy and admits that it’s hard and stressful,” says Herbert. Parents “sometimes get teary or start talking and don’t stop for 10 or 15 minutes while they talk about their journey.”

Their stories inspired a new study to measure the psychological distress of caregivers and adults with food allergies in 20 countries. The study also examines how well families and adults with food allergies access mental health services.

Fear of food allergies: A problem at any age

The study found that psychological distress is widespread, with more than 77 percent of parents and caregivers reporting psychological distress related to their child’s food allergies. For adults with food allergies, the concerns are not much less – 68 percent said their food allergies caused stress and anxiety.

Their distress had several causes. One of the main causes was fear of severe reactions: 74 percent of parents and 64 percent of adults with food allergies said they feared this. They were also concerned about a possible fatal reaction: 52 percent of adults and 56 percent of caregivers had this fear.

Thirty-four percent of adults with food allergies reported that their anxiety was so severe that they suffered panic attacks.

This study is part of the GAPS (Global Access to Psychological Services for Food Allergy) study and is based on questionnaires with over 1,300 adults with food allergies and 1,900 caregivers of children. Published in the journal allergyParticipants from 20 countries took part. Most participants came from the USA, Australia, Brazil, Canada, France, Germany, Italy, Portugal, Spain and the United Kingdom.

Herbert and her colleagues now plan to use their findings to develop an evidence-based online mental health tool that can help families and adults with food allergies cope.

“There is a huge unmet need for mental health support, not just in the US or the UK, but worldwide,” says Dr. Herbert, director of psychological research and clinical services in the Division of Allergy and Immunology at Children’s National.

“The vast majority of patients and caregivers suffer from this condition. On the other hand, we hear that they are not being screened for it and that there are not many resources they can turn to if they suffer from this condition.”

What worries adults with food allergies

About 54 percent of adult participants with food allergy found the impact of food allergy on their lives to be “sad,” and 51 percent said they were distressed by the “loss of a normal life.”

Adults were also concerned about whether they could avoid unsafe foods: 60 percent said this worried them.

Coping with relationships, social situations, work, and food allergies were also sources of stress and anxiety.

Some specific concerns of adults with food allergies participating in the study:
• 51% were afraid to trust others and trust them to know what to do in case of an allergic reaction.
• 45% found it stressful to tell others about their food allergies.
• 35% said that bullying due to an allergy was a source of stress.
• 30% feared that food allergies would make it difficult to find a partner.
• 29% were concerned about whether they would be able to find or keep a job where they felt allergy safe.

Food allergy Parents’ fear of trust

The worry of entrusting the care of their child to others was a major source of anxiety for the parents and caregivers in the study, with 71 percent saying that it caused psychological distress.

Nearly 60 percent worry that people won’t understand the severity of their child’s food allergy, even when they try to explain it to them.

“I hear a lot of stress about dealing with multiple households or multiple generations of caregivers who may not take the severity of the food allergy very seriously,” says Herbert. “I also hear about stress related to starting daycare, kindergarten or summer camp.” As children get older, Herbert says, worries even extend to “studying abroad or disclosing their food allergy to someone they may be interested in.”

Like adults with food allergies, parents were concerned about the social impact. Their concerns included:
• 42% feared they would not be able to participate in social activities because of their child’s food allergies.
• 41% fear social isolation due to food allergies.
• 34% feared that they or their child might be bullied because of an allergy.

About 51 percent of parents said their children also feel fear and anxiety about their food allergies. Parents also feel sadness about the impact of food allergies on their lives, with 56 percent saying this.

Concerns about safe food and nutrition

Adults with food allergies and parents alike are concerned about access to safe or allergen-free foods—55 percent of adults and 48 percent of parents said so.

Both groups were also concerned about restricted diets, with 44 percent of adults with food allergies and 33 percent of caregivers saying this was a cause for concern.

Fear of adrenaline auto-injectors

In the survey, just over half of adults with food allergies reported a history of anaphylaxis. However, only 49 percent had a prescription for an epinephrine auto-injector.

Children were more likely to have an auto-injector. Almost 70 percent of caregivers said they had a prescription for one. Almost half of the children had suffered an anaphylactic shock.

Participants were asked about concerns related to adrenaline. For adults with food allergy:
• 39% were afraid of being given an epinephrine auto-injector.
• 38% are concerned about carrying the device with them.
• 30% reported concerns about access to an auto-injector.
• 18% say they have a fear of needles.

Among caregivers of children with food allergies:
• 36% said they were afraid of using an auto-injector.
• 30% are concerned about carrying the device with them.
• 25% had concerns about access to the medicines.

Not enough support for mental health

In many countries, it is unusual to test for symptoms related to food allergies at an allergy appointment. According to the study, about 21 percent of adults with food allergies, 12 percent of their caregivers and 16 percent of their children have undergone such testing.

While there are regional differences, barriers to seeking mental health care include: cost, lack of insurance coverage, lack of physician referrals, lack of availability, lack of time, and childcare issues. The stigma of being “labeled as having a mental health problem” was also a concern for some.

Only one-fifth of caregivers and adults worldwide have consulted a mental health professional for a food allergy. The study concludes that there is a “global unmet need for mental health support” among caregivers, children and adults with food allergies.

How allergists can help

The online mental health tool the researchers are developing is based on techniques that have been shown to be effective in treating anxiety disorders. But allergists also need to help their patients feel empowered to manage allergies, Herbert says.

Doctors should ask patients open-ended questions about the psychological impact of food allergies, including: “How does food allergy fit into your life? What is the biggest challenge for you? Are there times when you feel like you cannot participate in life because of food allergies?”

“It’s so valuable to have an allergist validate, listen to, and normalize the fear associated with food allergies,” says Herbert. They should also identify mental health professionals with knowledge of food allergies to whom they can refer their patients.

How adults and families with food allergies deal with food allergies is very individual and must take into account their priorities and lifestyle, says Herbert. For example, some adults and families with food allergies may not mind avoiding restaurants. For others, never eating out would be a huge inconvenience and a huge loss.

If individuals or families miss activities or social events that are important to them, or if they feel very anxious about participating, it may be a sign that they need more support.

Whatever they choose, “we want them to be able to continue doing the things that are important to them,” Herbert says. “If they plan to send their child to public school, we want them to be able to continue doing that. If they have a special family vacation or there are family rituals or cultural traditions that are important to them, we want them to be able to do that.”

Further reading:
Survey on air travel with allergies: From fears to problems with the crew
Allergic Living’s Guide to Food Allergy Anxiety