The Journal of School Nursing2023, Vol. 39(4) 332–339© The Author(s) 2021Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/10598405211019030journals.sagepub.com/home/jsn
The primary goal of this study was to examine young adults’ perspectives about the effects of their food allergies (FAs) on their social lives from school-age to young adulthood. Young adults aged 18–21 (n = 10) at the University of South Carolina were interviewed. A qualitative descriptive method to find themes and commonalities from transcribed interviews was used for data analysis. Identified themes were (1) feeling different and being isolated, (2) strategies for managing feeling different and being isolated, (3) strategies for managing safety, and (4) acceptance of myself and by others. School-age children attributed the school lunch allergy table as contributing to social isolation. Additionally, participants described feeling different and concerns about safety. Strategies to mitigate those experiences were identified by participants. Implications for children with FAs, their parents, school nurses, and other education and health professionals who work with children are presented.
Keywordshypersensitivity, social isolation, food hypersensitivity, child development, school nurse, food allergies
Food allergies (FAs) are a rising public health risk in the United States contributing to increased emergency department visits, hospitalizations, and health care costs (Motosue et al., 2018). Among children in the United States, approximately 8% (5.6 million) have at least one FA of which 42.3% have experienced life-threatening reactions (Gupta et al., 2011). Furthermore, one in five school-age children will experience a reaction while attending school (McIntyre et al., 2005). While FAs can be severe and sometimes fatal, reduced quality of life for children with FAs is the most prevalent negative outcome (Ferro et al., 2016; Fong et al., 2017; Protudjer et al., 2016). Factors related to FAs resulting in reduced quality of life include bullying (Bollinger et al., 2016; Brown et al., 2020; Fong et al., 2017; Liberman et al., 2010), teasing (Fong et al., 2018), and social ostracism (Walkner et al., 2015).
School policy and procedures vary despite the existence of clear national guidelines recommending emergency preparedness in the form of lifesaving medications and food allergen avoidance (Centers for Disease Control and Prevention [CDC], 2013; National Association of School Nurses [NASN], 2018). Although designed for safety, school protocols often unintentionally reinforce social ostracism, in the form of separation from peers at lunchtime, home-schooling, and exclusion from social events (Fong et al., 2017). Exclusionary restrictions decrease opportunities to expand social skills, solidify social groups, and increase peer involvement (Quach & John, 2018). Moreover, school-age children with FAs may see themselves as different from their peers (Quach & John, 2018).
The purpose of this research was to describe the effects of FAs on the social life of children as they age into young adulthood. Knowledge about the social impacts of FAs and the factors that contribute to those social impacts will enable school nurses and other education and health professionals to collaborate with parents and children to devise school policies and practices to ameliorate the negative social consequences of FAs. Knowledge gained also informs strategies that children and their parents can use to safely manage FAs.
Inclusion criteria for the study were undergraduate enrollment in the University of South Carolina, a large, public, urban university in the southeast; one or more FAs that originated before age 10; and English proficiency. Study participants were recruited using convenience sampling. Recruitment strategies included displaying flyers on campus, posts on social media, and snowball sampling. Students who had an interest in participating contacted the primary investigator via email to set up a meeting at a mutually convenient location. The study received an exempt designation from university’s institutional review board. Participants were provided with a letter detailing study-specific information, including potential risks and benefits, and they were given the opportunity to ask any questions. Verbal informed consent was received from participants before data collection. Participants were incentivized with a US$25 gift card. Participant recruitment continued until data saturation was reached (n = 10). Data saturation was defined a priori as having data from at least two interviews that failed to generate any new codes.
Prior to the interview, participants were asked to report demographic and FA-related information through a questionnaire, including gender identification, age, type of allergy, age of FA onset, and educational attainment. Participants selected a pseudonym that was used during the interview to enhance confidentiality. A semistructured questionnaire with eight primary questions was developed collaboratively by the researchers (Appendix). After asking the primary questions, the interviewer asked customized prompts to obtain more detail, explore a theme in more depth, or clarify a point. Interviews lasted approximately 30–45 min and were digitally recorded on two devices and then professionally transcribed.
Using low-inference content analysis (Colorafi & Evans, 2016), three researchers collaboratively reviewed the first three interviews, a technique used in similar studies (Stjerna, 2015). Using the coding schemes identified, a coding manual was created and then independently used by the three researchers to code the remaining seven transcripts. Next, the researchers collectively reviewed each transcript. Coding schemes were edited and amended via an iterative process of comparative analysis. No new codes were identified following analysis of the seventh interview. Thus, data saturation was identified following Interview 9. However, a 10th person had already been interviewed, so the data collected through the 10th interview were analyzed, and recruitment was halted. The relationships among the codes were collaboratively grouped into categories. Emerging themes and their relationships to one another were identified from the categories.
Ten participants, aged 18–21, were interviewed. Table 1 depicts the participants’ demographic characteristics. The average age of FA onset was 3.11 years. Participant allergens ranged from two to 11 (median four FAs as children). The most common allergens were tree nuts (n = 8), peanuts (n = 4), eggs (n = 3), and sesame (n = 3). As adults, nine of the participants had two to four FAs, with only one participant falling outside of that range with 10 FAs (median 3.5 FAs as adults).
All participants expressed feelings of isolation at some point due to their FAs. Physical isolation was reported by most participants (n = 7), including having to leave the room when someone ate an allergen or being excluded from activities. For many participants (n = 6), the primary example of feeling left out was during lunch at school. Participants reported being separated, usually at a designated table for students with FAs. Participant 5 shared the following:
Every single day of lunch. I’m not even kidding you, the cafeteria probably had 30–40 tables and our grade only took up 25 of them, and they put me in one corner and there was so many tables in between me and the other group and I felt like I was in a box. That was probably the most isolated I’ve ever felt.
Despite the effects of physical isolation, the extent of emotional isolation and impact was recalled with greater frequency due to participants feeling that they were different from their peers. Participants recalled difficulty coping with this systemic isolation and described lunchtime as particularly upsetting, as they were missing out on important socialization time. In addition to school lunches, participants discussed other isolating situations, such as sporting events, birthday parties, enjoying meals with friends, field trips or traveling, and sleepovers. Examples of situations where participants felt different were when they had to have special food or could not join their friends in certain activities:
Food, everybody loves food, it brings everybody together. But at the time, it didn’t bring me together; it kind of pushed me away. I just did not enjoy the social situations with food involved. (P5)
Participants expressed that the difference was sometimes subtle, but that over time, it created an overall feeling of not being normal. Small instances that created a separation were still noticeable to the participants as being bothersome. These experiences of isolation during childhood continued as they aged. Many participants shared stories that described their feelings of isolation and being different were not just because of food restriction but also because of the social aspects. When participants could not eat certain foods with friends, they were missing out on both the food and the socialization that came from enjoying something together. For example, one participant recalled being unable to attend a birthday party that involved apple picking because of her apple allergy. Subsequently, she was unable to participate in discussions when her friends were recalling the shared experience, which resulted in ongoing feelings of being different. Another participant (P2) shared:
She would end up like going to a friend’s room and they’d all get like Insomnia Cookies and—like they’d eat it there and she wouldn’t tell me about it because she didn’t want me to feel bad but that was kind of a way that, you know, I couldn’t share those experiences.
Overall, participants expressed distress over feelings of isolation and exclusion. Some participants noted that moments of subtle isolation were just as upsetting as instances of physical isolation. Cumulatively, the experiences of isolation created feelings of being different from their peers.
Participants described strategies for managing isolation. The most common strategy was to develop good friends. Friends served as a buffer to feeling different and being isolated. Some participants stated that good friends joined them at the allergen-free lunch table. Others mentioned instances when their friend(s) would leave an allergenrelated situation with them. Having strong, supportive friendships promoted positive social experiences. Strong friendships were sometimes created by finding others who had FA experiences:
But sometimes, I’d make friends with people that really cared or—my best friend growing up, his brother had allergies and so he was constantly looking out for me. (P1)
Participants were resourceful in devising solutions for minimizing isolation and exclusion. During their younger years, participants reported that their parents helped them develop useful strategies. For example, parents helped by packing a safe lunch for a field trip, whereas in college, participants volunteered to provide an allergen-free item for a potluck. Sometimes participants managed social isolation by minimizing their FAs to others so as not draw attention to themselves. By quietly handling their allergy, they felt that they could participate in social situations while decreasing the attention brought to them, thus lessening the feeling of being different:
Or if I had to, just make it as small of a deal as possible. Like downplay, even though I knew if I eat this, I could die. But I don’t want to tell anyone that. Because kids think that that’s weird. (P6)
All participants mentioned strategies used to minimize risks and increase safety. Preparation was a common strategy used during a social situation or when away from home. Participants reported that food vigilance was necessary to stay safe and described methods to prepare for social interactions. Some participants said they would bring their own food items to social events due to uncertainties of the ingredients in the provided food; participants reported that this strategy helped them feel comfortable eating and allowed them to know that they would have something safe eat when away from home:
I mean just growing up—basically when I was young, I lived off of Dinty Moore beef stew—it’s a canned beef stew—it’s one of the few things I could definitely have. And we’d go on vacations and my mom, bless her heart, would pack suitcases full of this stuff so I could actually eat on vacation. You know, the things was—like I said, nothing was normal—any trip you made, anything you did you had to be careful—yeah. (P1)
Another safety strategy was reading food labels and questioning restaurant servers about ingredients and food preparation. Effective communication allowed some participants to feel safer and more confident. Participants perceived these strategies as extra responsibilities that were sometimes “annoying” or “frustrating,” but it helped them know what food was safe to consume and decreased their worry about eating away from home as exemplified by these participants:
Well, if I ever go out to restaurants, I always have to tell the waiter like right away, like, “Hey, I’m allergic to peanuts,” or, “Hey, can I have like a—do you have a peanut-free menu, or shellfish?” give the whole list .... (P4)
There’s always some degree of ambiguity of what is in this, and you just have to either ask around or like, I’ll mad Google stuff while I’m at the restaurant sometimes. (P10)
Some participants carried epinephrine autoinjectors, allergy medication, and/or inhalers in case of a reaction. Of the four participants who mentioned participating in sports, two discussed how they always had their medication nearby but were more hesitant to use it during an event because they were worried about being embarrassed or looking “soft.” Participants disliked the responsibility, burden, and attention that came with carrying medication, but most reported that it made them feel safer and less anxious:
Carrying it around just made me feel secure, like I can deal with it myself. So incorporating that aspect of self-management gave me a feeling of control over it. (P8)
Participants often informed others, particularly trusted friends or roommates, of their allergy as another safety strategy. In addition, a few participants reported training others how to respond in the event of an FA reaction.
Almost all participants expressed that their social experiences improved as they aged. Participants said they had come to accept their allergies and themselves. Some participants talked about how their FA attitudes were initially shaped by their parents. For example, one participant (P4) said, “They made me feel like it wasn’t a burden or it wasn’t anything to be ashamed of ....” Many participants stated that the process of acceptance came by learning and understanding that being different is okay and that everyone has unique attributes. Participants who experienced this said that the feelings of being different did not go away completely, but they now understood that being different was not embarrassing or wrong. Other participants experienced acceptance of themselves by understanding how FAs fit into their identity. Understanding the relationship between FAs and their identity was sometimes a combination of accepting themselves and perceiving their acceptance by others:
As a little kid I thought I was labeled for food allergies. I thought that was my label but as I got older I realized people aren’t looking at me as just allergies. I’m just a normal kid. Not that I’m not normal but they don’t see me just as a food allergy kid, they saw me as a normal person with food allergies if that makes sense. I still kind of recognize that and I guess that’s where I was able to mature in a sense and realize that it’s just part of me, it’s not who I am. Ooh that’s good, that’s a good one. (P5)
Participants reported that having an FA was less socially distressing as a young adult. Participants cited maturity as a contributing factor toward this shift:
As I’ve gotten older, I think I’ve become more comfortable with myself in general, and it’s really just not something, and also like everyone else obviously matures. Like no one our age is going to make fun of me for having food allergies.
I guess just maturity and acceptance. There was nothing I could do about it. Now you realize when you’re older that everybody’s different but when you’re a little kid, I just wanted to be the same as everybody else. It doesn’t bother me at all really, I’m just like it’s nothing, it’s really nothing. I guess just maturity changed that and just accepting. (P5)
In addition to maturity, participants perceived that people were more well-educated about FAs as compared to previous years. Several participants suggested that FAs were more common, and greater public awareness reduced the association of being “weird” because of an FA.
...people realize that it’s not an embarrassing thing to have. It’s not like I am–I mean, I am genetically flawed, but I’m not a flawed person because of it, and people get that now. I don’t have to explain or really defend myself because of it. (P6)
Participants noted that there were positive aspects of living with FAs, which included learning to be responsible, being grateful for the food they could eat, having empathy for others with special needs, and learning to advocate for themselves. Overall, participants felt that self-acceptance and acceptance by others positively influenced their FA experiences. Acceptance reduced isolation and feelings of being “different” and allowed them to perceive positive aspects of having FAs. Despite acceptance, strategies for managing social isolation and safety were still used to navigate social engagement. As shown in Figure 1, the four themes, feeling different and being isolated, strategies for safety, strategies for managing social isolation, and acceptance of myself and by others, are related and linked through maturation.
Children who are diagnosed with an FA are at an increased risk of social ostracism and social anxiety (Fong et al., 2017; Walkner et al., 2015). The findings from this study affirm prior research that the social impacts of FAs were some of the most upsetting challenges children encountered while managing their FAs (Fong et al., 2017). Further, the overall results aligned with Bronfenbrenner’s socioecological model describing influences on child development (Bronfenbrenner, 1977). The model depicts the child at the center surrounded by systems that affect child development. The system closest to the child is parents, followed by friends and other family, then community, and finally the larger societal system (Bronfenbrenner, 1977). The closer the system is to the child, the stronger the impact on the individual. At the individual level, the participant with the FA had the strongest influence as to how they felt about their allergies. When participants accepted themselves and their allergies, the social impacts of their allergies were minimized. When participants perceived their FAs made them different from their peers, social isolation and feelings of being different were heightened. Participants perceived that the social disruption from FAs was much less in college than when they were younger, a finding supported in prior research that showed that the quality of lifeimprovedaschildrenwithFAsaged(Petrovic-Dovat et al., 2016). Participants reported that maturation and effectively incorporating strategies to manage social situations and risk increased their social engagement over time.
Parents, the next closest system to the child, influenced participants’ feelings of being different. Participants who had parents who approached their FAs as a manageable characteristic recalled less social disruption than participants who reported that their parents reinforced the notion that FAs made them different. Outside of parental influence, friends had the greatest impact on participants and their childhood socialization, aligning with Bronfenbrenner’s (1986) socioecological model. Positive friendships protected against isolation and feelings of being different. At the community level, schools were the biggest system that impacted participants’ social interactions and development as children.
Current school guidelines focus on the emergent needs of anaphylaxis, training of school personnel, and providing alternative allergy-free areas for students (CDC, 2013). Although these guidelines promote safety, the results of this study highlight the potential impacts of exclusionary and discriminatory practices that accompany these policies. The school FA policies employed at participants’ schools often reinforced perceptions that children with FAs were different and increased feelings of social isolation for these children. Each participant related lunchtime stories about the “FA table” and the negative impact of such segregation. These school policies reduced the child’s ability to expand social skills and solidify their social networks. Likewise, Dean et al. (2016) revealed that three fourths of students reported feelings of overt discrimination and internalized feelings of shame related to school isolation due to an FA. Although normalization begins to occur as children mature, accept, and understand the lethality of their conditions, the consequences of stigma are heightened as it occurs during a psychologically and sociologically formative time in their life (Dean et al., 2016). As a consequence, school-age children may be deterred from engaging in health-seeking behavior. As the child enters adolescence, this lack of engagement can put them at greater risk of entering unsafe spaces in effort to fit in with their peers.
This study had a small convenience sample of undergraduate college students from the University of South Carolina. Thus, the experience of nonvolunteers may be different. As well, the experience of children who do not attend college may be different from those who attend college. Further, the sample was 70% female so may not have accurately represented the experiences of males. However, data saturation was reached after the seventh participant and the eighth participant was a male with no new findings identified during that interview. Participants in the study all had multiple FAs, whereas in the general adult population in the United States, only 45.3% of adults with FA have multiple FAs (Gupta et al., 2019). Thus, the study participants’ experiences may differ from the population in general, particularly those who have only one FA. Future research with larger, more diverse samples is needed to advance overall knowledge about the effects of FAs on children’s social development.
The results of our study indicate the need to develop further strategies to reduce the social impacts of FAs. School nurses are ideally situated to facilitate this process. Their practice is grounded in community and public health, they have expertise in care coordination and quality improvement, they serve as a liaisons between families and schools, and have a core mission of promoting students’ health and safety (NASN, 2018). Thus, school nurses can be proactive in leading the development of sound policies that ensure the safety of the child and advocate for the social development of children. As reflected in the NASN’s (2018) role of the 21st-century nurse position paper, “School nursing is a specialized practice of nursing that advances the wellbeing, academic success, and lifelong achievement and health of students.” The improvement of the lives, learning, and well-being of students with FA is an exemplar of this role. While many schools have implemented policies, such as designated lunch areas for students with FAs (Kao et al., 2018; Mustafa et al., 2018), there has not been enough research to create best practice guidelines for creating allergy-free areas (Bartnikas et al., 2017). Our study findings indicate that current policies created for safety in the form of allergy-free tables during lunch can harm a student’s social interactions and their sense of self. Advocating for the development of school action plans that focus on student and parental involvement to promote effective communication, problem-solving, and empowerment is consistent with professional practice guidelines for school nurses (NASN, 2018).
School nurses and other health care professionals can support children with FAs by assisting in student and parental education to assure that they understand these responsibilities and by working closely with parents and schools to create accommodations to attenuate social isolation and the impacts it may have on the child. Information about social impacts could be included in educational packets received when children are first diagnosed with FAs and at the beginning of each school year. Other mechanisms could include directing parents toward educational workshops, on-demand webinars, or websites that provide relevant information and answers to frequently asked questions (Graham et al., 2019; Lawlis et al., 2017).
Parental education can also highlight specific strategies focused on empowerment and engagement with their child, school, and health care provider thereby reducing the impact which our study highlights. Parental education to empower their child and decrease social isolation may include measures such as reinforcement of the notion that all children have unique traits and that an FA is one of those traits. Parents can also ensure that their child always has alternative food options, so they can join in any food activity that may occur. School nurses and health care professionals should be actively involved in the provision of such tools and information about FA social impacts along with fundamental lifesaving safety measures.
As children age, nurses can encourage parents to model ways to ask about food ingredients when the family is eating away from home and ask their child to read food labels. Nurses can work with the child and parent to devise a reaction action plan to reduce their fear and anxiety of having a reaction in a social situation. School nurses can also encourage parents to discuss allergy management options with their child’s allergist specifically asking that they review appropriate potential allergens to be sure the child is following the best guidelines. Literature suggests that children who avoid food that “may contain” their allergen had poor quality of life (Warren et al., 2016). Working with their child’s allergist, parents may be able to help the child add back some food items, thereby improving their quality of life.
This study confirmed previous research that some of the most upsetting challenges encountered by children with FAs were an increased risk of social ostracism and social anxiety. Those experiences had profound effects on children that could last into adulthood (Fong et al., 2017; Walkner et al., 2015). Based on the study findings, it is important to increase education and action about childhood FAs. Prospective research to identify the most effective strategies to reduce the isolation and social anxiety realized by children with FAs is needed. As the incidence of FAs grows and researchers recognize the strong effect that FAs have on the social welfare of children and young adults, evidence-based interventions to reduce social ostracism and keep them safe from their FAs are critically important.
Abigail Anderson and Cynthia F. Corbett contributed to conception, design, acquisition, analysis, or interpretation; drafted the manuscript; critically revised the manuscript; gave final approval; and agreed to be accountable for all aspects of work ensuring integrity and accuracy. Elizabeth M. Combs and Sheila Hurst contributed to acquisition, analysis, or interpretation; drafted the manuscript; critically revised the manuscript; gave final approval; and agreed to be accountable for all aspects of work ensuring integrity and accuracy.
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The research was partially supported by the Advancing Chronic Care Outcomes through Research and iNnovation (ACORN) Center at the College of Nursing, University of South Carolina and a South Carolina Honors College Senior Thesis/Project Grant.
Elizabeth M. Combs, MA https://orcid.org/0000-0002-2254-6958
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Abigail Anderson, BS, is a medical student at the University of South Carolina School of Medicine, Greenville, SC, USA.
Elizabeth M. Combs, MA, is a project coordinator at the University of South Carolina College of Nursing, Columbia, SC, USA.
Sheila Hurst, PhD, is a clinical assistant professor at the Washington State University College of Nursing, Spokane, WA, USA.
Cynthia F. Corbett, PhD, RN, FAAN, is a professor at the University of South Carolina College of Nursing, Columbia, SC, USA.
1 University of South Carolina School of Medicine, Greenville, SC, USA
2 University of South Carolina College of Nursing, Columbia, SC, USA
3 Washington State University College of Nursing, Spokane, WA, USA
Corresponding Author:Abigail Anderson, University of South Carolina School of Medicine Greenville, 607 Grove Rd., Greenville, SC 29605, USA.Email: andersonae4@gmail.com
