To our knowledge, this is the first study carried out in the United Arab Emirates to look at factors influencing parental use of AAI for children at risk of anaphylaxis.
In our population, most cases of anaphylaxis in children were triggered by the common offending food allergens, in addition to sesame, responsible for 15% of the cases and previously unreported in local studies [2].
Despite the training provided and persisting doubts on when to administer the AAI, the parents’ self-perceived technical competency and comfort level in using the device are less than desired. Regardless of all being tr ned by the allergy specialist, and although 36% of parents had the experience of administering AAI during an acute episode, 21% still had incomplete knowledge of the situations when they must use the AAI, and 2% were still not sure.
The level of comfort in injecting the AAI was inadequate or uncertain in 27.5% of the respondents and 19% remained undecided about their competency in administering the AAI. Results from a previous study revealed that only 30% of parents of children aged 0–18 years with food allergy and anaphylaxis, dared to use an AAI. Moreover, only 75% of the users demonstrated good skills and technique on using the autoinjector device [11]. Two-third of the respondents in our study were mothers, on whom the psychological effects, mainly anxiety, mental functioning when having a child with a food allergy or anaphylaxis, and their effect on the child’s medical care has been well documented [10] and it may even exceed the amount of stress encountered by having a child with diabetes [11]. Reassuringly, parents who had previous experience in using the AAI expressed a higher level of comfort to use it again.
The perception of the quality of training revealed uncertainty or a clear negative opinion in 12.5% of the parents. Despite efforts to adequately train the parents on the management of anaphylaxis in their children, difficulties with the training remain, as highlighted by their perception of the quality of that training. Although it has been argued that it is not the knowledge of the previous experience of anaphylaxis which raises parents’ comfort in using AAI, it was the empowerment, instead, with the continuous instruction and education on using AAI correlating significantly with the parents’ level of comfort, in defiance of the presence of undefined psychological factors undermining parents use of the device [10]. For all these reasons, we believe that parents and caregivers should be encouraged to periodically use the expired unused auto-injector on inanimate objects such as cardboard, apple, orange, before discarding it. Such regular practical experiences would give them a real-time tactile and visual experience, as well as boost their confidence.
The range and magnitude of the psychological stressors that parents encounter seem to have been often overlooked and, as they have an impact on the outcome of any training and the parental empowerment, they need to be dealt with by consistently providing psychological support [12, 13]. Parent support groups where parental anxiety, fears and experience with the AAI when shared among parents would also be of help[12].
Like any self-administered questionnaire, our survey might have included parental recall bias or their selection of answers aiming to please the treating physician. These limitations might have been alleviated by a direct face to face interview, as well as asking the parents to demonstrate on an inanimate object or simulation mannequin how to administer the AAI. This would objectively assess the parents’ confidence and competence better than simple parental recall or perception of the events. However, in an attempt to minimise the aforementioned bias, instead of using the time regularly allocated to review and consolidate parental knowledge and confidence with the AAI at the end of each clinic visit, we used it for the survey on that day, preventing, therefore, any, immediate, prior teaching to influence parental responses.
Another limitation is the small sample size and a single-centre experience, limiting the generalisation of our results. A larger multicenter study across the other regional paediatric clinics would have helped to overcome those limitations.
To better understand the parents’ underlying beliefs and attitude in managing anaphylaxis in their child, a qualitative study will be needed by face to face interview. The aim would be to elicit, record and analyse their responses, comments and feelings about the psychological effect they endure and on their thought process when their child develops anaphylaxis. Such information would be helpful to clinicians and psychologists for developing appropriate interventions to help the families.