Evidence that having a peanut allergy has worse quality of life for a family than having diabetes… Mostly due to fear of unexpected severe reaction, and restrictions on social activities particularly eating out, parties and holidays.
Allergic patients can feel embarrassed or even ridiculed for declaring their allergy. Allergy is often mocked in the media (Cobra Kai, the Box Trolls, Peter Rabbit).
School and nursery are a particular area of concern, whether the right foods will be served, whether teachers or other children might bring allergens into school (food is sometimes used in classes, for example making bird seed balls), whether reactions will be managed appropriately, school trips. Children have died in school (Nasar Ahmed, Mohammed Ismaeel Ashraf).
Mums tend to be more concerned by limitations in the child’s own social life, dads seem to care more about limitations in the whole family’s social life. [Stensgaard, Clin Exp Allergy 2017]. Mums are the ones most studied. There probably are significant differences between mums and dads. In some studies, parents overrate their child’s quality of life, but in others (particularly with teenagers) parents can be seen as over anxious. Teenagers tend to take on the perspective of the parent of the same sex.
How bad previous reactions have been, interestingly, does not in itself contribute significantly to quality of life – in some cases, not having ever had a reaction can make families more anxious, because they don’t know what to expect! In one study, having multiple allergies and having an adrenaline pen was associated with worse quality of life. [Protudger, Clin Transl Allergy 2016]
Parents can feel guilty if their child has a reaction, a failure of their duty to protect. Mums can feel guilty about having “caused” their child’s allergy, either through their own medical history or what they ate or didn’t eat in pregnancy (even there is no good evidence for this being a factor).
Better quality of life is seen in allergic families with greater self efficacy for food allergy management, and lower perceived likelihood of a severe reaction [Knibb, Pediatric Allergy & Immunology. 27(5):459-464, August 2016].
8 European countries, questionnaire study of adults and children with peanut allergy.
Only a minority remembered getting any training in future emergencies or use of medication, after their initial reaction. There was a low rate of satisfaction with AAI training!
43% reported bullying, and a third of these described it as severe.
65% confident in ability to recognize a reaction, but only 45% confident about knowing when to use an AAI and 59% how. 62% say the carry AAI all the time.
25-30% said it was not easy (or rarely easy) to talk to friends or family about their allergy, although most felt confident talking to new people about their allergy. Friends and family were generally seen as “believing there is too much concern over allergy” even though overall they were seen as having a good awareness and understanding of allergy (cf other people, where this was seen as the opposite).
Dutch respondents had lowest rates of uncertainty and stress around activities, and for feeling anxious. At same time, they had the highest rates of confidence around knowing when and how to use AAI. France had highest rate of being made to feel different in a negative way, and feelings of isolation.
NB – likely to be the most affected families who participated.
[Dunngalvin, Allergy 2020]