High psychological distress experienced by food allergy patients and caregivers

Psychological distress is common amongst those living with food allergy, but a new study co-led by a researcher at Aston University has shown that little support is available to those who are struggling.

1-7 October 2024 is Anaphylaxis Awareness Week, the theme of which is the emotional impact of allergies, so the research is particularly relevant.

Two-thirds of adults with food allergies and three-quarters of adult caregivers reported psychological distress related to food allergy, according to new research co-led by Aston University's Professor Rebecca Knibb. In the UK and Canada fewer than 10% of participants were screened for psychological conditions as part of a routine food allergy appointment, while only a fifth of participants in the study reported accessing psychological support for food allergies.

The findings are from the Global Access to Psychological Services (GAPS) for Food Allergy study, which was set up by a team of researchers in the UK and the US. The GAPS study aims to explore the psychological needs of adults and children living with food allergy and parents caring for a child with food allergy. 1,329 adults and 1,907 caregivers of children with food allergy from more than 20 countries took part in the online survey for the GAPS study.

The most commonly reported concern amongst adults with food allergies was anxiety about an allergic reaction, closely followed by general anxiety about living with a food allergy. Other common concerns included anxiety about avoiding unsafe foods and the loss of a normal life. Caregivers were fearful of trusting other people with their child and concerned that others wouldn't recognize the seriousness of their child's allergy. Sadness about the impact living with a food allergy has on their life was also common across groups, as was concern about bullying. The UK, Australia and Brazil had the highest percentages of participants reporting distress.

The biggest barrier to access to psychological help was cost. The GAPS study found only very low levels of stigma and worry about seeking support from a mental health professional, so according to the team, the lack of assessment and referral to appropriately trained clinicians requires attention.

The researchers say psychological screening should be available at any age, particularly for anxiety and low mood, and should be free or low-cost to ensure wide access. There is also a need for informational and educational resources.

Our research highlights a major unmet need for psychological support for food allergy.

The cost of support is a significant barrier across all countries in our survey and ways of providing free and easily accessible support is clearly needed.

We hope to address this in our GAPS study and are currently developing an online toolkit for adults and caregivers which will support them in managing food allergy."

Rebecca Knibb, Professor, Aston University