Parents of nut-allergy sufferers face hostility and scepticism in trying to find safe environments for their children, a new study has found.
Researchers found that parents are routinely made to feel by friends and even family that their child's nut allergy is a 'frivolous and self indulgent fad invented and maintained by attention-seeking people.'
Children in the study described how they were bullied by classmates saying, "I've got nuts and I'm gonna touch you!"
The research by a team from the University of Leicester, the London School of Economics and Political Science, and the Children's Allergy Clinic at University Hospitals of Leicester NHS Trust has found that children suffering from potentially deadly nut allergies often struggle with negative attitudes and unhelpful food labelling.
Funded by Midlands Asthma and Allergy Research Association (MAARA), the researchers interviewed 26 families about the techniques and strategies they use to cope in various situations. Their findings, published in the journal Chronic Illness, point to a need to raise awareness of the dangers associated with nut allergy.
Professor Mary Dixon-Woods from the University of Leicester Department of Health Sciences said: "Nut allergy was a frightening experience for most families. One mother described how her son's eyes "swelled up completely so you could hardly see his pupils.," . This child, like many others in the study, had to be rushed to hospital after his first reaction.
Parents in the study described taking multiple precautions to ensure their child was safe, including creating nut-free environments at home. But when they tried to get others to cooperate in keeping their child safe from nuts, they could encounter hostility and scepticism. "People's approaches ranged from scepticism, disbelief and in some cases complete lack of care, which could put the child in danger," said author Dr Emma Pitchforth.
One parent said receiving birthday party invitations was a "nightmare" because other children's parents think nut allergy "is a bit faddy," and don't realize it can be life-threatening. Other parents described incidents where they suspected that people - including family and friends - had deliberately given their child nuts to test if the allergy was real.
Nut allergy was a source of ongoing anxiety for families, who can find themselves socially isolated and excluded. "Families felt they could never fully rely on anyone, including friends and relatives", said Janet Willars, who interviewed the families. "Despite their best intentions, friends and families were not always able to give full attention to the child's safe-keeping."
Vague packaging on foods and uninformed service staff at some restaurants and supermarkets all added to families' problems. It was sometimes so hard to find out whether food contained nuts that families resorted to cooking every meal from scratch and never eating out or accepting invitations to social occasions, say the researchers.
The research team includes Dr David Luyt, a consultant who diagnoses and treats children with allergies in Leicester. He recommends better public education about the dangers of nut allergy. "These parents and children see a society that is willing and able to accommodate vegetarians and many others with dietary restrictions, but not them," he said. "This research is a wake-up call for improvement in food production and labelling to help families and children maintain a safe environment and reduce stress and difficulties," he added.
Note to newsdesk:
To be put in touch with the authors and with families who have taken part in the study, contact:
Lisa Hallam, Research Administrator
Department of Health Sciences
University of Leicester
Second Floor, Adrian Building, Leicester. LE1 7RH
Telephone: + 44 (0)116 252 2267