Online community reveals psychosocial concerns of teens with food allergies
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Although adolescents with food allergies have physical concerns that need care, there are six areas where their psychosocial needs should be addressed as well, according to a study published in Annals of Allergy, Asthma & Immunology.
“This study was prompted by several years of informal observations of psychosocial difficulties faced by adolescents with food allergies, yet research and interventions tend to focus almost exclusively on young children and their caregivers,” Melissa L. Engel, MA, a PhD student in the Emory University department of psychology, told Healio.
“Research from other pediatric populations suggests that adolescence may be a particularly challenging time for youth with medical conditions, especially as the responsibilities of self-management transition from parent to child,” Engel continued.
Between January and September 2021, the researchers examined the registration responses for Food Allergy Research and Education’s Teen Talks online video-based social program for youth aged 11 to 22 years with food allergies. Engel conducts these free, hour-long talks each month.
“Food is central to much of adolescent social life, which naturally creates hurdles for those with food allergies, whether in the context of navigating restaurants with friends, kissing a prospective romantic partner or working a first job,” Engel said.
During the registration process, participants are asked, “What do you hope to gain from Teen Talks? If you have specific activities you’d like to see covered, please include those here,” and the researchers analyzed the responses from 461 participants.
The registrants were aged a median of 15 years (standard deviation [SD], 2.58). More than 85% had allergies to two or more categories, including each of the top nine allergens, fruits, vegetables and other foods (median, 3.47; SD, 2).
Based on these responses, the researchers identified six psychosocial needs:
- connecting with other adolescents with food allergies (39.7%);
- sharing experiences (32.1%);
- learning how to navigate social situations such as dating, restaurants and school (27.55%);
- coping with emotional challenges such as anxiety, bullying or guilt (11.93%);
- increasing food allergy knowledge (11.5%); and
- gaining confidence, independence and communication skills (8.03%).
The researchers also counted 19 responses they classified as “other” and another 99 as “no response.” These psychosocial needs did not differ based on the age of the registrants or the number of allergens they reported.
“We thematically analyzed their responses to what they hoped to gain from this program, which is marketed as a way to connect with other teens with food allergies, ie, purely social in nature,” Engel said. “In other words, teens were not asked about their difficulties, but solely what they hoped to get out of this online social program.”
Engel particularly called the proportion of registrants who wanted to discuss navigating common teenage social situations that may pose challenges for those with food allergies — such as eating out, dating and partying — “striking,” adding that food allergy anxiety traditionally has been conceptualized as fear of anaphylaxis or food phobia.
“However, these findings suggest that adolescents may also experience social anxiety related to their food allergies. In other words, teens may fear negative social evaluation, or judgment from others, due to their food allergies. This is a critical direction that we hope to explore in future research,” Engel said.
For example, one registrant reported feeling like the “ugly duckling,” while others said they had felt guilty or ashamed for making others feel bad for needing to accommodate their food allergy precautions.
Additionally, many registrants said they felt alone in their everyday food allergy struggles and that they would like to develop friendships with a community of relatable peers, which the researchers did not find surprising among the participants in a social program.
As the prevalence of food allergies increases, Engel continued, it is vital to understand the unique psychosocial difficulties that these adolescents face.
“Messaging from physicians often focuses on preventing youth from having serious allergic reactions. While protecting physical health is paramount, it is imperative that doctors have resources to support the complex psychosocial needs of adolescents with food allergies,” Engel said.
“Physicians may consider asking teenage patients about their greatest food allergy challenges and providing appropriate mental health referrals when needed. Physicians may also encourage the development of programs that allow teenage patients to connect and share their experiences,” Engel said.
Few initiatives currently target adolescents, the researchers said. New teen-only social programs, videos that focus on communication, role-playing, virtual communities and just asking adolescents about their challenges could support and empower these patients, the researchers said.
“The next step in this research is to systematically investigate and build upon our uncovered psychosocial difficulties in more demographically representative and generalizable samples. We see our qualitative findings as novel and preliminary, and we would like to examine the extent to which they are upheld in a national sample,” Engel said.
The researchers will soon assess these findings in a nationally representative, longitudinal study of youth with food allergies, Engel continued.
“To date, our psychosocial functioning measures have primarily been parent-reported. As youth transition into adolescence and young adulthood, we will be able to examine their own reports of various psychosocial difficulties that may be unique to this developmental period,” she said.
Reference:
- FARE Talks. https://www.foodallergy.org/resources/fare-talks. Accessed May 6, 2022.
For more information:
Melissa L. Engel, MA, can be reached at mlengel@emory.edu.
Perspective
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Katherine K. Dahlsgaard, PhD, ABPP
This is an informative, qualitative study that analyzed the responses teens with food allergies gave when asked what topics they would like to see covered in an online video social support program.
Adolescence is marked universally by increased independence, more time away from parents and greater concern regarding what their peers think of them. The teen participants' most common requests, as analyzed by the researchers, were right in line with what we would expect given where they are developmentally.
These teens with food allergies said they wanted to connect with others like them, share experiences and learn how to navigate common social situations that involve food, such as restaurants and dating. They also wanted to address concerns regarding their social fears of being different from their peers.
This is not surprising. In my clinical practice, I treat children and families with excessive anxiety regarding their food allergies, usually crippling fears about cross-contamination that limit their comfort in engaging in low-risk social situations involving food.
But many of my teen patients also cite social concerns that they “stick out” or that they inconvenience their friends at restaurants and parties. This is easily addressed in treatment sessions with role-plays and specific homework assignments to increase teens' skill and confidence in asserting themselves and navigating these new environments safely without their parents.
Parents who read about this study may catastrophize and jump to the unwarranted conclusion that their teens with food allergies are anxious all the time and suffering from undiagnosed mental health problems. This was not a conclusion of the study, and I want to caution parents against this.
It is important to note that teens with food allergies citing social concerns should not be interpreted as these teens having excessive anxiety nor social anxiety disorder. The researchers were clear that they did not formally assess participants' anxiety via validated questionnaires or clinical interview.
Rather, I think the findings should be reassuring to parents of adolescents with food allergies. Teenagers with food allergies are still teenagers, with developmentally appropriate and expected concerns about navigating social experiences gracefully when their parents aren't around to do it for them. They are interested in connecting with peers who face similar challenges and learning how they can keep themselves safe as their independence grows. That is healthy caution and appropriate concern, and it is good news.
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