1 in 13 children in the United States, or roughly 2 in each classroom, are allergic to one or more food allergens. Seemingly harmless foods that the rest of us take for granted can symbolize life or death for these children. With food allergies on the rise and nearly 90% of reactions caused by the top 8 food allergens, we have seen a shift in society’s accommodations, with the prohibiting of sharing foods and/or the the banning of peanuts and tree nuts in various schools. There is no cure for food allergies, which makes living with this medical condition all the more serious. The physical symptoms of an allergy reaction are undoubtedly painful for the child to endure and for the parent to watch.
We learned that both the children and parents’ feelings surrounding food allergies extended far beyond the physical—they were deep-rooted in that of trust, isolation, fear, and awareness. With this in mind, we see the greatest opportunity to design a solution that eases the emotional and psychological impact of living with food allergies. By focusing on these areas, the physical strains of food allergies will consequently be lessened as well. We hope to provide support in navigating the all-encompassing experience from diagnosis to acceptance.
Project Planning, Participant Recruiting, Designed and Moderated Research Activities (Literature Review, Competitive Analysis, Interviews, Participatory Design Activities, and Diary Study), Note Taker, Journey Mapping, Analyzed & Synthesized Data, Presented Findings.
How do food allergies affect interpersonal relationships in both the child’s and guardian’s lives?
How do children and parents, prevent, react to, and manage the food allergy?
Relationship Circle Design Exercise
We explored various types of sources to inform our knowledge around food allergies before beginning our primary research and going out into the field. These sources range from magazine and newspaper articles, blog posts, nonprofit websites, and research papers. At its essence, food allergies are a health problem. Therefore, we had to understand, at a medical level, why food allergies exist and how the body’s immune system is affected. We learned staggering statistics about the severity of food allergies in our current state, and from there, we delved into the social and psychological implications of food allergies. Our extensive review led us to realize how complex food allergies can be for not only the child, but for all the relationships intertwined in the child’s life.
In-depth Expert Interviews
For each expert we recruited, we created a set of questions tailored to their specific area and walked them through a semi-structured interview. These were done in-person at their office or over the phone, lasting an hour long.
Our goal was to seek information about the allergy community at a scientific and local level. We recruited 4 experts ranging from community leaders and industry practitioners where they are viewed as higher authorities when it comes to something as complex as food allergies. We wanted to get their perspective on not only the allergy itself, but also the child/parent relationship. Additionally, we wanted to understand what treating these allergies from a technical standpoint was like and add that information to our secondary research. We also aimed to gather insights on the importance of the community around food allergies and how they are managed.
Our primary participants were child-parent dyads. We aimed for preteen children (ages 9-12) with one or more food allergies. We specifically chose to recruit in dyads to better understand the interpersonal relationship both parties since we believe the partnership between the two are essential in managing a preteen’s food allergies.
We chose to recruit by:
Leveraging social media and public Slack groups
Reaching out to food allergy support groups
Using the UW community
Directly emailing SeaFAC members (Seattle Food Allergy Consortium), a group of professionals with expertise in childhood allergies
Designing posters with pull-off tabs to place in libraries and community centers
Our screener survey was used as a recruiting method for the majority of our participants. Participants within the Seattle area were recruited as semi-structured interviews, whereas participants outside the Seattle area were asked to participate in our diary study. In the survey, participants were asked the age of their preteen, allergies their preteen had, location, and email address.
Recruiting Screener Survey
The Diary Study was a week-long journal we had our child-parent dyads fill out. We chose to conduct our diary study with three participants located in different parts of the country. From their entries, we learned about their experiences with food allergies and how much they varied from each other. The data ranged from experiences in schools, grocery stores, restaurants, and with other people in and outside of their community.
We sent email instructions with the diary template attached and asked parents and their children to fill out the packet over a 7-day period. To ensure our participants were completing the diary as intended, we asked them to send us their entries after the first day. Each day, participants recorded different occasions when something happened that was relevant to the child's food allergy (i.e. anything the participant did, something someone may have said, or an event that has occurred). Additionally, participants recorded their moods, concerns, and thoughts in relation to these events. We followed up with a 30-minute debrief call in which we further discussed their entries. This provided a great opportunity for us to identify and refine questions that we wanted to address in later research methods.
We conducted semi-structured interviews with parent-child dyads at their home or pre-agreed locations, lasting anywhere between 45 to 75 minutes long. By asking both parent and child about managing allergies together, we were able to gain a more holistic understanding of their interpersonal relationships as well as their relationships with allergies.
We built rapport by starting with a design exercise with the child while asking the guardian questions about their experiences with their child’s allergy. Part way through the interview, we switched back to the preteen and asked questions about their daily experiences, and had them complete a participatory design exercise.
Questions focused on home, school and social life as well as family and community relationships as well as policy-related issues. If we were conducting an in-home interview, we would end our interview with a tour of their kitchen, to get an understanding of how they organize their food. Semi-structured phone interviews were conducted for remote dyads using the same script as in-home interviews.
Participatory Design - The Relationship Circle
The Relationship Circle is a participatory design exercise we created to learn how preteens view their relationships with people in their immediate and extended community. The mat had a center circle with the word ‘me’ and rings moving outwards and it came with a deck of cards of people that might be in the child’s life. Children were asked to write their name in the center circle and place whichever cards they saw best fit on the outer rings. The closer the people were to the child on the mat, the more comfortable the child felt to the person. We asked them to repeat this activity by placing people accordingly in terms of who is closer or more trustworthy with the child’s food allergies. We documented the artifacts by taking pictures and talking through why they placed the cards where they did, as well as why the two versions of the mat did or did not differ from each other.
We conducted a competitive analysis of eight products in the food allergy space. Each application uses a different form to address the needs of people experiencing food allergies. They range from portable food testers to wearables to OIT (oral immunotherapy). Most of the products are designed to prevent an allergic reaction from occurring, while others are response-based. Because most of these products are relatively new to market, they lean more on the preventative side of the spectrum. This might be due to the impact they would have on hindering policy or insurance-related issues that inevitably come up with reactionary solutions, which require greater time and money on medical research backing. The EpiPen remains the dominator in the reactionary space. We evaluated each product using the criteria of credibility, price, and physical design. Our assessment led us to think about the following potential areas to explore.
Research Findings and Sensemaking
We transcribed and coded our interviews, and reviewed our findings together. By using affinity diagramming, we organized and synthesized our data and categorized our insights into 4 themes.
Theme One - Trust
Insight 1.1: Trust between the parent and teacher is reliant on the teacher’s proven understanding of how to deal with food allergies
Outside of the home, children spend the greatest amount of time at school. Parents look to teachers to take on the role of ‘secondary guardian.’ Unforeseen circumstances that may occur in this relatively uncontrolled environment causes parents to worry.
“The main thing that makes me feel like he’s safe at school is actually his teacher. So the teacher he gets every year, I meet with them beforehand every year. The teacher he has this year has food allergies herself so she is really, really good. She’s amazing. We lucked out this year. The one last year didn’t have personal experience with it, but she did take it seriously.” -Phone Interview 4, Parent
Insight 1.2: Trust in the school system is compromised when regulations surrounding allergy education are inconsistent
National guidelines exist around food allergies in school systems, however, every school district differs from one another. Most schools have some set guidelines in place, but are not being followed by school staff, students, nor those students’ parents.
“The school does not fully understand the impact of inclusivity or the impact of food allergies. I wish schools were universally better. I wish they didn’t use food-based incentives at all. I wish there were laws on how things were regulated on food. I wish there were more specific laws for schools.” -Diary Study 2, Parent
Insight 1.3: Parental trust is dependent on their childs ability to take control of their environment
As much as parents can teach their children about food allergies and how to protect themselves, children will remain children. They are reaching their teen years at which they become susceptible to peer pressure and food urges.
“I’m most nervous that she will want to rebel and eat things. I think that already came through in the peanut candy incident. She knew, but the fact that she ate the candy and being with her peers made her do that.” -Home Interview 6, Parent
Theme Two - Isolation
Insight 2.1: Children feel isolated with their food allergy because their natural curiosity to try new things is severely restricted, relative to their social circle
When it comes to a child’s social circle, many interactions are based on experiencing things with their peers for the first time. When that part of their life is limited, as the case with food allergies, is when children feel most isolated.
“My friends always have something that I can’t always have. Almost always. They use it against me sometimes. Like they might eat it so I can’t be around them.” -Diary 2, Child
Insight 2.2: Because food is a central aspect for social activity, there is a cultural stigma when one cannot participate
In different cultures, especially America, the breaking of bread is a core part of social interactions. Because the nature of food is a communal contribution or personal offering, it is considered rude to decline and creates a cultural stigma around that parent/child.
“I asked for her to wait to do the lesson tomorrow and I would make the brownies. And the teacher said ‘well I think it’s okay for her to know she can’t eat that’ and I said ‘well this is a class activity and every child deserves to be included.” -Diary Study 2, Parent
Insight 2.3: Parents feel their child is isolated when others do not consider the higher threshold of needs
Parents of children with food allergies want their kids to be treated with the same level of attention and care as their peers. It is especially difficult for parents to hear that their child was excluded from activities in the classroom or social setting.
“The school does not fully understand the impact of inclusivity or the impact of food allergies. If there are cupcakes or something and my child can’t eat it, she has to be away from it, and for a long time i felt like it bothered me more than it bothered her” -Diary Study 2, Parent
Insight 2.4: The isolation nature of food allergies is the foundation of a tight knit community
Communities such as Facebook groups or child friend groups are often formed on the basis of isolation. There is a mutual understanding in these communities that other people ‘just don’t get it like we do’ and a frustration that their needs are not cared for.
“For a little while I was labeled the food allergy mom.. it was fine, but it was kind of negative because everyone wanted me to fight their battles. But I had to separate myself in certain situations because it was affecting myself and my son, so I’ll give advice instead of going on behalf of them.” – Expert Interview 1
Theme Three - Awareness
Insight 3.1: The high variability in food allergies causes society to be jaded by the word ‘allergy’
Limiting diagnostic testing and parent’s concern over what their child is allergic to, cause people outside the allergen community to think of the word “allergy” as a catch-all for food issues. This mixed with the varying degree of allergic reactions makes the outside community view allergies as mild disruption and an inconvenience in their lives.
“People don’t get it, or find it inconvenient until they have to deal with something similar.” -Phone Interview 1, Parent
Insight 3.2: There is a consensus amongst the food allergy community that unknown environmental triggers have caused an increase in food allergies
There has been a 106% increase in the diagnosis of children at risk for anaphylaxis in the U.S. since 2016 and a 2.5% increase in doctor's visits related to food allergies since 2006. Both parents and doctors agree that unknown environmental triggers are the cause of many food allergies in the western culture.
"In Asia, they tend to boil there peanuts and here we roast them... there isn't a genetic explanation for this.. it's the way they are prepared." -Expert Interview 2
Theme Four - Fear
Insight 4.1: Heightened anxiety stems from the trauma experienced during a past allergic reaction
Allergic reactions could range from minor hives to difficulty breathing. These traumatic experiences leave an enduring feeling that remains with families for a long period of time. Parents can only do so much when it comes to preparing and keeping their loved ones from an allergic reaction. The loss of control and unpredictability of their child experiencing a reaction drives fear.
“I get angry she has food allergies and it’s scary to send her to school knowing a hug or high-five can be deadly”– Phone Interview 1, Parent
Insight 4.2: Parents assume the worst about their child’s condition due to limitations and ambiguities of diagnostic testing
Once children are diagnosed with food allergies, parents tend to latch to the idea of the food allergy being worse than it really is. Diagnostic testing methods are unreliable and lack reassurance that the treatment will do more good than harm. The anxiety of these food allergies often adds an emotional toll, as some children who are tested negative for some foods, still have a reaction. So they avoid all foods in that specific category.
“There are problems with testing. There needs to be better diagnosis because we never really know from testing”– Expert Interview 2
Insight 4.3: Distraction is a commonly applied coping mechanism for children experiencing allergy attacks either during or after
When children experience an allergic reaction, they take epinephrine or generic medication and wait it out until the symptoms lessen. In the meantime, they are in pain and experience anxiety, stomach aches, and restlessness. Through this time, the only thing children are left to do is to shift their attention to something else.
“And then we’re starting to do meditation techniques. Like, let’s breathe deeply. Or if it’s really bad, he asked me to play a video game in front of him, or if I can read him a books, so that it distracts them. So distraction is really critical too.” – Home Interview 1, Parent
I mapped out the experiences of having a food allergy based on our research findings. This helped us better understand the behaviors, thoughts, and feelings from the moment of getting an allergic reaction, to accepting and adjusting to it.
Ideation + Narrowing to 5 Concepts
We used storyboarding to test 5 concepts, and ultimately decided on the Allergy Box concept as it resonated and excited our participants (and our team)
Child-Parent co-designing their allergy box
Prototype testing takeaways
Is the box for a parent or kid?
The text is too small / hard to read
Are these all the food allergies?
Make the ingredients the key highlight