Dr. Edmond Chan and Dr. Lianne Soller of the BC Children’s Hospital are spearheading a series of studies on food allergy in children. Late last year, they asked us to help recruit participants for a study on anxiety in parents of children with food allergy.
Though the study is recent and most of the data hasn’t been processed yet, Dr. Soller shared some preliminary results with us. Check out our interview with her below.
You collaborated on this study with Dr. Edmond Chan, right?
Right. Dr. Chan is the principal investigator on this study, and he has several other ongoing research projects in this department. We actually just started working with anxiety as one of our topics, and it’s been really interesting to see some of the feedback we’ve been receiving about this specific survey.
Your study was designed to measure the level of anxiety among parents of children with food allergy. How did you define anxiety in that context?
We had two different ways that we measured it. One was using a validated generalized anxiety tool, which is called the State-Trait Anxiety Inventory (STAI). Basically, that’s a list of about 40 questions that ask about your “state anxiety”, how you’re feeling right now, and then your “trait anxiety”, which is how you feel generally. Based on that, it gives you a score from 20 to 80 – the higher scores indicate higher anxiety, and the lower scores indicate lower anxiety.
We also created a “visual analogue scale”, where you rate how anxious you are about your child’s food allergies on a scale of no anxiety to very high anxiety. We created that scale because the STAI measures generalized anxiety, but there isn’t a specific measure right now that addresses anxiety related to food allergy. This is the first time that we’ve been able to measure that level of anxiety in parents of children with food allergy.
The hypothesis for our study was that the STAI might not accurately represent how anxious parents are about their child’s food allergy. So, that was why we did the two different measurements.
It’s obviously early days, but do you have any results yet?
We haven’t finished our analysis of all the questions yet, but from what we know so far, we are very surprised to find that the average score for families on the question of how high they would rate their anxiety around food allergy was 71 on a scale of 0 (not anxious at all) to 100 (extremely anxious). That’s a very high level of anxiety, we are quite surprised that it was that high. When we looked at the STAI scores, we found that they were higher than the general population. We also found that the STAI scores were different than the self-reported anxiety specific to food allergy. We still have to look further into the results to see whether the STAI will be a good predictor of anxiety related to food allergy.
Can the level of parental anxiety affect outcomes?
We haven’t really looked at that data yet, but in our clinic, we do a lot of oral food challenges and we see a lot of very anxious families. We know anecdotally that higher anxiety in the parents can trigger anxiety in the children, and that’s problematic. We do want to have a healthy level of anxiety, just so the child remains cautious, but there’s that grey line between what is healthy and what isn’t.
We do know that in oral food challenge situations, a lot of parents come in extremely stressed, and their worry can inadvertently lead the child to feel more anxious, which in turn may make the child feel like they are having a reaction. For example, when parents are asking questions like, “Oh, are you okay now?”, “How are you now?”, “Do you have a stomach ache?”, “Does your head/throat hurt?”, etc., they can cause anxiety in their child which the child may interpret as having a reaction.
We do know that there are important implications for the child’s behaviour and their perceived allergic reactions when they are anxious. That’s one of the reasons we’re doing this study, not only to measure the level of anxiety in parents, but we want to better understand what kinds of things parents are struggling with, and help them to cope with their anxiety, and as a downstream effect, prevent some of these adverse effects from happening.
Help them how?
Actually, the survey that we’re talking about now is just the first part of the study, and the second part is based on focus groups. In the focus groups, many of the parents were saying that anxiety is something that is a little bit taboo and can be isolating. When they mention any sort of issue of having trouble coping with their child’s allergies, people just don’t understand and there really isn’t any support from either the medical community or their social circles. That was really sad for me to hear. That part of the study was to look at resources that families might find helpful in coping with their child’s food allergies. Most families said that when their child was diagnosed they were not given any resources. To me that speaks to what we’ve heard in our clinic, which is that families feel alone, and that nobody understands or wants to give them any information except “carry an EpiPen® and don’t eat peanuts.”
How has Food Allergy Canada assisted you with these studies?
Food Allergy Canada was generous enough to send our call for participants to their members, and we were able to get about 600 survey responses, which is fantastic, way beyond what we had expected – we’re very, very happy about those results. We were also able to get several individuals interested from the Greater Vancouver Area to come to BC Children’s Hospital for our focus groups. Without Food Allergy Canada, we wouldn’t have any of that data, so we’re very thankful to them. The past Executive Director, Laurie Harada, was extremely helpful in guiding me in terms of creating the questions and making sure that the survey wasn’t too long and making the questions really applicable to the families.
Is there anything else you’d like to share?
If anyone wants any more information about our research, people can contact us at firstname.lastname@example.org. Myself or one of my colleague’s answer the questions sent there.
Our key mission is to help you live more confidently with food allergy. If you are feeling anxious about your child’s food allergy, we have many resources to help you:
- Contact us for additional support at email@example.com or 1 866 785-5660.
- Sign up for one of our many webinars on the foundation in food allergy, which offer support and provide education on the basics of anaphylaxis and food allergy, and how to manage on a daily basis.
- Connect with a local support group. Support groups provide a warm and caring environment for you to share your concerns and get help dealing with the day-to-day stress of having a child at risk of anaphylaxis.