Psychosocial Impact of Food Allergy on Children and Adults and Practical Interventions

Abstract

Purpose of Review

IgE- and non-IgE-mediated food allergies are increasing in prevalence in children and adults worldwide. A food allergy diagnosis can be associated with a sense of overwhelm and stress and commonly has a negative impact on quality of life.

Recent Findings

While there is an increased recognition of the psychosocial effects of food allergy, the current research reflects the experience of mostly White, well-educated wealthier populations. Some studies have now explored the psychosocial impact among other populations; however, further study is needed.

Summary

It is important that physicians and allied health professionals screen for the potentially negative psychosocial effects of food allergy and provide education to promote safety and self-efficacy at each visit; however, time may be a limiting factor. Numerous validated questionnaires are now available to help assess the psychosocial impact of food allergies. Allergy-friendly foods are typically more expensive, and thus, it is imperative that physicians screen for food insecurity as well. Educational resources should be offered regarding living well with food allergies at each visit. For patients and families experiencing anxiety or food allergy burden that is difficult to manage, referral to a mental health provider should be considered. Resources regarding programs to help accessing safe foods should also be available. Further research is needed among diverse populations focusing on interventions to best support patients and families with food allergy.

The psychosocial burden of IgE-mediated food allergy (IgE-FA) in children, caregivers, and adults has been increasingly studied over recent years. In this article, we will review the psychosocial challenges of IgE-FA and food protein-induced enterocolitis syndrome (FPIES) on children, caregivers, and adults, with a particular focus on novel measures, insights, and interventions.

Daily Management of IgE- and Non-IgE-Mediated Food Allergy

FA requires daily management and constant vigilance. The chronic and unpredictable nature of FA can affect patient and family psychosocial functioning and quality of life (QOL) [1]. Accessing safe and nutritious foods is challenging; meal preparation requires more time, and eating outside the home and family activities, such as vacations and parties, may be limited by FA [2, 3]. FA contributes to additional expenses for families, resulting from costly allergy-friendly foods and travel accommodations that include kitchens. In a US study of 325 children with FA matched 1:1 with children without FA, the prevalence of food insecurity was comparable between the groups, at 22.2% and 20.9%, respectively, (OR = 1.90; 95% CI 0.86–1.96, p = 0.20). However, compared to those with either no FA or only one FA, households of children allergic to both milk and egg were 2.5 times more likely to report food insecurity (OR 2.5; 95% CI 1.4–4.6, p = 0.003). Among households with a child with FA, those who were food secure had significantly better QOL than those who were not food secure (p = 0.049) [4].

Psychosocial Impact of Food Allergy

Children and Caregivers

Children’s developmental stages play a role in adjustment and coping with FA [5]. Across all ages, common caregiver concerns include how to balance safety with social inclusion and how to teach children about allergic reactions without instilling maladaptive fear and anxiety in the child [5, 6]. Adaptive levels of anxiety may contribute to appropriate vigilance to allergen avoidance whereas sustained, intense anxiety may lead to avoidance of situations involving food or dietary restrictions beyond what are medically necessary [7].

Many children with FA and their caregivers report impaired psychosocial functioning, including reduced QOL and increased anxiety, worry, and depression [3, 8]. Specific demographic and medical variables may be associated with FA-related psychosocial outcomes. Older children with FA are reported to experience more QOL impairment than younger children [3]. In studies of IgE-FA, having multiple FAs compared to single FA is associated with greater QOL impairment and greater psychosocial burden [9-12]. Studies have also shown differences in QOL by specific FA, though foods associated with greatest QOL impairment differ by study [11-14]. Specific food differences may be explained by differences between study populations, including age, race, ethnicity, socioeconomic status, geography, and cultural factors that affect the ubiquity of food to the family’s diet.

FA diagnosis can negatively impact social well-being and interpersonal relationships for both children and caregivers. One-third of children with IgE-FA report experiencing bullying, and children with FA are twice as likely to be bullied compared to children without FA [6, 15-18]. Bullying is associated with decreased QOL and increased distress in children and their parents [16]. Racial, ethnic, and geographic differences may exist in FA-related bullying, though most studies were conducted among primarily White, non-Hispanic, higher income North American cohorts [6, 15-17]. Further, caregivers report strains in interpersonal relationships, including experiencing hostility from relatives or other parents when trying to accommodate their child’s FA; 25% of parents in one study reported their child’s FA had caused a strain in their marriage [19].

High psychosocial burden is also reported among children with FPIES and their caregivers [20-22]. Distinct concerns related to FPIES management, such lack of diagnostic tests, limited evidence-based recommendations to guide food introduction, and poor awareness of FPIES among many healthcare professionals, may contribute to caregiver QOL burden and psychosocial distress [23]. Caregivers of children with FPIES have lower self-efficacy and impaired QOL that is worse than in IgE-FA [21, 22]. Caregivers of children with FPIES reported increased stress and worry and increased anxiety in their preschool-aged children [22]. FA management self-efficacy was significantly lower in caregivers of children with FPIES versus IgE-FA [22, 24]. Similar to IgE-FA avoiding a greater number of foods due to FPIES was associated with greater caregiver QOL impairment and child anxiety [21, 22]. Lower household income was associated with lower QOL and FA self-efficacy among families with FPIES [22]. The participants in these studies were predominantly White, non-Hispanic, educated families with higher income. Further studies are needed in more diverse cohorts of FPIES patients and families.

Adults

In adults with IgE-FA, psychosocial functioning varies by country of origin, avoided food, and whether the FA persisted since childhood or was adult-onset [25, 26]. Adult-onset FA around the globe is increasing [27, 28], highlighting the need to better understand its psychosocial impact. Three to four percent of the Western adult population is affected by FA, while the prevalence of perceived FA is even higher, up to 35% in some studies [27]. In a study by Gupta et al., 20% of US adults thought they had a FA when with strict criteria about 10% actually had an IgE-mediated FA [29]. In a nationally representative sample of FA in adults with and without a physician diagnosis in the USA, worse FA QOL was associated with being treated in the emergency department for FA, perceived FA severity, being prescribed an epinephrine autoinjector (EAI), and previous treatment with an EAI [30]. FA QOL reflects the impact of food allergy on quality of life. Having a greater number of FAs and specific types of FA (i.e., wheat, milk, sesame, and soy) was associated with worse FA QOL [30]. In a survey of adults with FA from eight European countries, FA QOL differed across countries, with the most impairment in Sweden and least in Iceland [25]. Of note, the Swedish participants reported greater perceived severity and risk, were older, and allergic to milk, egg, or wheat [25]. There were significant differences in recruitment, ages of the adults, proportion that experienced anaphylaxis, and proportion prescribed EAI [25]. However, the differences may also reflect cultural variations related to coping with life events and attitudes about FA [25]. Another European study sought to identify factors among adults and children that affected HRQL (health related quality of life). HRQL refers to an individual’s perception of physical and mental health. In adults, having milk or fish allergy, skin symptoms, and female gender was associated with worse HRQL; however, experiencing anaphylaxis was not [13]. A Dutch study explored the FA QOL among food-allergic adults who did and did not seek medical care [31]. Those individuals seeking medical care for their FA had worse QOL, particularly in the domains of allergen avoidance, dietary restrictions, and emotional impact [31].

A US study exploring FA QOL in adults with persistence of childhood-onset FA with those with adult-onset FA and found those with persistent childhood-onset FA had worse FA QOL [26]. It is unclear whether these differences relate to the most commonly implicated foods, severity, or another factor [26]. Of note, the childhood-onset group was associated with peanut and tree nut allergy, history of EAI use, and ED visits, while the adult-onset group most commonly reported shellfish allergy [26].

The psychosocial impact of FPIES in adults has not been previously explored and is an important area of future study as cases of adult FPIES are increasingly being reported [32]. More research is needed on the impact of FA on adults and interventions that can improve QOL.

The Intersection of FA Medical Procedures and Treatment with Psychosocial Functioning

Oral Food Challenges

A Dutch study explored the impact of a double-blind placebo controlled oral food challenges (OFC) in children, adolescents, and adults on QOL [33]. They found that nonreactive OFCs had a greater positive impact on QOL than reactive challenges, especially when the participant did not have any other FAs [33]. In adults in particular, QOL improved more with nonreactive OFC than reactive OFC and in both cases improved from baseline [33]. Adults and children had modest improvements in HRQL with reactive OFC [33]. This is similar to a previous study on QOL in children demonstrating improvement following OFCs regardless of the outcome [34]. However, in adolescents, HRQL improved after a nonreactive OFC but did not change during reactive OFCs [33]. Improvements in QOL following reactive OFCs may be related to increased certainty in the FA diagnosis or increased confidence following successful management of a reaction.

Oral Immunotherapy

As new treatments for FA are being developed, research studies have started examining the impact of these treatments on psychosocial functioning. Children with IgE-FA who underwent oral immunotherapy (OIT) and their caregivers have improved QOL, with variation by child age. Improved QOL has been reported in studies of OIT for a number of individual foods, as well as in multi-food OIT, either alone or in conjunction with omalizumab [3, 35, 36]. QOL improvement has been observed both in build-up and maintenance phases of OIT protocols. In one study, the degree of QOL improvement was not significantly different between partially and fully desensitized groups, perhaps highlighting a psychological benefit of daily consumption of the allergenic food, even if at lower doses. In the same study, subjects who failed OIT treatment did not experience a significant change in QOL versus controls [35]. It should be recognized that some patients and caregivers may experience psychosocial burden associated with OIT, such as anxiety about ingesting a food that has been carefully avoided, challenges with lifestyle modifications, and taste aversion to allergenic foods that may cause stress with dosing [37-39]. Child and caregiver QOL is an important outcome in food OIT trials and should factor into shared decision-making discussions between patients and providers when considering initiating OIT. Child age, child and caregiver expectations, and the child’s specific FAs should also be taken into account when contextualizing these findings. Finally, racial and ethnic disparities in FA OIT clinical trial representation and in OIT awareness and access may impact generalizability of these findings, as a predominantly White, wealthy, and educated population was studied [2, 40, 41].

Psychosocial Food Allergy Measures

The flagship FA-related psychosocial measures have been QOL measures for adults, caregivers, and children with FA developed and validated in the early 2000s [42]. These measures have provided the allergy community with a robust understanding of the impact of FA on daily life. Accompanying these measures is the Food Allergy Independent Measure [43], which assesses FA-related risk perception and impact on daily life. Informed by clinical observation, new psychosocial measures specific to FA have been developed and are being examined by researchers. These tools are useful for both research and clinical practice. HCPs may choose particular tools based on presenting concerns and time constraints in their practice. For all HCPs, review of these tools raises awareness of questions to ask as part of a routine assessment of how a patient and family are coping with their FA.

Food Allergy Self-efficacy

FA self-efficacy represents an individual’s perception of their ability to successfully engage in daily FA management behaviors such as allergen avoidance and administering an EAI. Understanding an individual’s self-efficacy regarding FA management is crucial, as it can lead to conversations about ways to build on the skills in which they are confident and identify areas where additional education, training, resources, and experience could be helpful. The Food Allergy Self-Efficacy Scale for Parents (FASE-P) [24] is a validated assessment tool that has been used in research with caregivers of children with FA in the UK and among a diverse sample of caregivers in the USA.

Food Allergy Anxiety

FA-specific anxiety is increasingly being recognized as unique from general anxiety and may manifest as preoccupation with worries about allergen exposure and anaphylaxis, over attention to physiological symptoms that may overlap with allergic reaction symptoms, and avoidance of foods and situations beyond what is medically necessary. Recent measures of FA-specific anxiety include measures of youth anxiety completed as self-report and parent proxy-report (the Scale of Food Allergy Anxiety (SOFAA)) [44], caregiver anxiety about their child’s FA (Impairment Measure for Parental Food Allergy-Associated Anxiety and Coping Tool (IMPAACT) [45] and Worry About Food Allergy Questionnaire (WAFA) [46]), and adult patients’ FA anxiety (Food Allergy Anxiety Scale (FAAS)) [47]. These measures may be used to guide discussion about situations causing excessive anxiety or avoidance beyond what is medically necessary, education about the level of risk in different situations/how to mitigate risk, and referrals to mental HCPs.

Food Allergy Daily Management Behaviors

FA daily management requires patients and caregivers to check for allergens and carry emergency medication, but adherence to FA management guidelines is challenging to assess due to the nature of retrospective self-reporting. The Food Allergy Management-24 Hour Recall (FAM-24) [48] is an interview-based tool that assesses the behaviors that a child or caregiver engaged in over the past 24-h to avoid allergens and be prepared for allergic reactions. The authors are continuing to modify this measure for use as a tool to guide education and skill-building regarding FA self-management.

Table 1 provides a list of published psychosocial measures.

Table 1.

Measures of psychosocial aspects of food allergy

Title	Construct	Respondent	Patient age range	Number of items
Food Allergy Quality of Life Questionnaire-Parent Form (FAQLQ-PF) [42]	Food allergy-specific quality of life	Parent	0–12 years	14–30 (based on child age)
Food Allergy Quality of Life Questionnaire-Child Form (FAQLQ-CF) [99]	Food allergy-specific quality of life	Patient	8–12 years	24
Food Allergy Quality of Life Questionnaire-Teen Form (FAQLQ-TF) [100]	Food allergy-specific quality of life	Patient	13–17 years	23
Food Allergy Quality of Life Questionnaire-Adult Form (FAQLQ-AF) [101]	Food allergy-specific quality of life	Patient	18 + years	29
Food Allergy Quality of Life-Parental Burden (FAQL-PB) [102]	Parent burden associated with child’s food allergy	Parent	Children with food allergy	17
Food Allergy Independent Measure (FAIM) [43]	Expectation of food allergy outcomes	Patient, parent	0–12 (parent report), 8–12, 13–17, 18 +	4
Scale of Food Allergy Anxiety (SOFAA) [44]	Food allergy-specific anxiety	Patient, parent	8–18 years	21
Food Allergy Anxiety Scale (FAAS) [47]	Food allergy-specific anxiety	Patient	Adults	15
Worry About Food Allergy Questionnaire (WAFA) [46]	Parent anxiety related to child’s food allergy	Parent	Children with food allergy	13
Impairment Measure for Parental Food Allergy-Associated Anxiety and Coping Tool (IMPAACT) [45]	Parent anxiety related to child’s food allergy	Parent	Children with food allergy	28
Food Allergy Management and Perceptions Questionnaire (FAMPQ) [103]	Adolescent food allergy management barriers and facilitators	Patient	11–22 years	25
Food Allergy Self-Efficacy Scale for Parents (FASE-P) [24]	Parent confidence in food allergy management	Parent	Children with food allergy	21

Used with permission from Burks et al. Food Allergy, ed. 2, Elsevier. In press

Novel Food Allergy Psychosocial Interventions

Psychosocial FA Interventions

Psychosocial FA intervention research thus far has primarily focused on mothers of children with FA. Interventions generally utilize cognitive behavioral therapy (CBT), self-regulation, or supportive theoretical models. CBT is a short-term intervention designed to improve psychosocial outcomes by altering a patient’s attitudes and thoughts and thus the impact of these on behavior and emotion [49]. Brief CBT interventions may contribute to reduced anxiety [50] and improved parent/self-efficacy [41]. There is initial evidence for psychosocial improvements with CBT for mothers presenting with clinically elevated anxiety [50]. A limitation of the extant research is that it has largely included single studies of the presented intervention without follow-up to large-stage clinical trials to examine efficacy. Thus, what commonly occurs in clinical practice currently is that mental health providers utilize evidence-based interventions for anxiety, like CBT, and adapt them to unique FA and patient needs. Recently developed interventions focus on interventions for children with FA who experience elevated FA anxiety and interventions that bolster adolescents’ and caregivers’ abilities to manage and cope with their FA. Most of these interventions are under development, so data are sparse, but they warrant comment. Larger scale trials among diverse patient populations are needed to more fully understand the effectiveness of these interventions.

Food Allergy Anxiety

As recognition of FA-specific anxiety pertaining to allergen exposure and anaphylaxis has grown, implementation of allergen proximity challenges and a CBT-based group therapy for adolescents are being evaluated. Allergen proximity challenges are sessions during which patients engage in exposure and response prevention in order to gain confidence in being near their allergen(s). This technique has been described in the literature and is actively used by clinicians specializing in FA but has not been systematically evaluated [51, 52]. A CBT-based group therapy program, the Food Allergy Bravery Clinic, has been developed to equip children with FA with the skills and evidence that they can be near their allergen without risk of anaphylaxis. CBT protocols for anxiety disorders unrelated to FA generally recommend graded exposures to avoided situations to provide corrective learning experiences to improve faulty risk assessment and lesson anxious avoidance. Initial results indicate that patients experience decrease FA anxiety and improved FA QOL [53].

Bolstering Food Allergy Management and Coping

Interventions that bolster patients’ and caregivers’ ability to manage FA and cope with FA have recently developed. The Food Allergy Parent Mentoring Program was a pilot study designed to assess the impact of a parent-mentoring program for mothers of young children with FA on maternal psychosocial functioning; results among a small sample were promising [54]. In another study, mothers of children with FA participating in an online group therapy program run by a nurse had decreased anxiety after the program [55]. Finally, a recent study evaluated the impact of a self-guided psychoeducational website for caregivers of children with FA, but the website had low uptake, and there were no differences in psychosocial functioning after the intervention period [56].

Practical Strategies and Tools to Help Your Patients

Demands on healthcare professionals (HCPs) have steadily increased in recent years. Juxtaposed against these demands are the high rates of single and multi-FA [57] that continues to increase [58], thus placing further demands on HCPs to optimize time and resources dedicated to patients. At the same time, the desire for psychosocial health support is high among patients with FA and their families [12, 38] and HCPs perceive the high need for such support for their patients [59]. Nonetheless, as some authors purport, the need for such support remains under-recognized [60]. Collectively, this may leave HCPs wondering what meaningful steps can be taken to support their patients.

Acknowledging the Burden of Food Allergy

A first step in offering patient support is to acknowledge that FA does carry a psychosocial burden and that this burden may shift because of intrinsic or extrinsic factors [61, 62]. Ongoing patient education is essential to help navigate a FA diagnosis to reduce the risk of accidental reactions and to appropriately recognize and treat a reaction.

Although FA can be diagnosed at any age [63], there is some evidence supporting that infants under age 1 year are the most likely to develop allergies, more likely to have milder symptoms such as dermatological and gastrointestinal symptoms, and less likely to have respiratory and cardiovascular symptoms than older children [64]. Parents have described feeling the most overwhelmed at the time of diagnosis for reasons that range from the volume of learning needed to manage FA to the risk of reaction and the lack of emotional support [61]. Many parents question their ability to keep their child with FA safe [65, 66], especially when children are too young to understand the diagnosis or articulate symptoms. Collectively, this points to two complementary needs that require ongoing consideration: FA education and FA anxiety management.

Food Allergy Education

The need for sustained evidence-based FA education cannot be understated. The field of FA has shifted dramatically in recent years, from delayed introduction and complete avoidance for all patients to early introduction for all infants and OIT and biologics for select patients. This shift highlights the need for ongoing education, so that patients and caregivers remain familiar with new evidence-based practices. Indeed, caregiver misinformation is common [19]. The frequency of patient and caregiver FA education has been minimally studied. However, we recommend that such education be offered at every patient encounter, based on literature supporting that knowledge about coping with a FA emergency persists for 3–12 months post-education in approximately half (57%) of participants [67].

Children with FA and their parents have been described as having greater fear and anxiety associated with news media reports of FA fatalities [68]. This points to the need for HCP to have current and trusted resources for patients and their families at the time of diagnosis and every subsequent visit, ideally, in multiple languages, hardcopies, and electronic resources. Table 2 lists a variety of useful resources.

Table 2.

Resources for food allergy patients and their families

Resources for families
Children’s books, TV show episodes, and music
Children’s books Daniel Tiger’s Neighborhood: Daniel Has an Allergy by Angela C. Santomero The Bugabees; Friends with Food Allergies by Amy Recob The Princess and the Peanut Allergy by Wendy McGuire Penny and the Peanut by Micaa’ Thomas Humfree the Bee Has a Food Allergy by Alison Johansen The Class That Can: Food Allergies by JJ Vulopas and Riya Jain
TV shows Daniel Tiger Season 3 Episode 4: Daniel Has an Allergy Arthur Season 9 Episode 10: Binky Goes Nuts
Music Kyle Dine,T he Food Allergy Musician Albums: You Must Be Nuts!; Food Allergies Rock
Coping toys Cellie Coping Kkit For Food Allergies
Books and magazines for adults with food allergy and parents of children with food allergy
Books The Food Allergy Experience by Ruchi Gupta, MD MPH and Denise Bunning Food Allergies: A Complete Guide for Eating When Your Life Depends on It by Scott Sicherer, MD Food Without Fear: Identify, Prevent, and Treat Food Aallergies, Intolerances, and Sensitivities by Ruchi Gupta, MD MPH
Magazines Allergic Living Living Without
Food allergy handouts for parents Food Allergy Stages handouts available through American Academy of Allergy, Asthma, and Immunology: https://www.aaaai.org/tools-for-the-public/conditions-library/allergies/food-allergy-stages-handouts Living Confidently with Food Allergy workbook: www.allergyhome.org/handbook (note: This handout is also available in Spanish.)
Food allergy apps Spokin, manage food allergies Yummly Recipes & Cooking Tools Eat Gluten-Free ShopWell-Better Food Choices
Websites Food Allergy Research & Education (FARE): www.foodallergy.org FARE Sifter: https://fare.sifter.shop Center for Food Allergy and Asthma Research (CFAAR) Videos: https://www.feinberg.northwestern.edu/sites/cfaar/ Food Allergy & Anaphylaxis Connection Team (FAACT): www.foodallergyawareness.org Allergy & Asthma Network (AAN): https://allergyasthmanetwork.org Kids with Food Allergies: www.kidswithfoodallergies.org The International FPIES Association: www.fpies.org American Partnership for Eosinophilic Disorders (ADFED): www.apfed.org The Food Equality Initiative: www.foodequlaityinitiative.org Food Allergy Canada: www.foodallergycanada.ca Allergy & Anaphylaxis Australia: https://allergyfacts.org.au/resources Anaphylaxis UK: https://www.anaphylaxis.org.uk/living-with-serious-allergies/ Allergy UK: https://www.allergyuk.org/allergyuk-resources/ Asthma and Allergy Foundation of America: https://aafa.org/programs/
Food charity/emergency food sources
Food equality initiative https://www.foodequalityinitiative.org/
Food Allergy Research & Education https://www.foodallergy.org/resources/food-banks-and-soup-kitchens
Allergy & Asthma Network https://allergyasthmanetwork.org/food-allergies/cant-afford-allergen-free-foods/
Food Allergy Canada (Information on hosting an allergy-friendly food drive) https://foodallergycanada.ca/tools-and-downloads/downloads/allergy-friendly-food-drive/

Adapted with permission from Burks et al. Food Allergy, ed. 2, Elsevier. In press

Social disparities are known to affect children with FA, including a family’s ability to provide safe foods [2]. For families for whom allergy-friendly foods may be financially inaccessible, the HCP could provide a list of options that may help reduce these costs [69] and, whenever possible, a list of local food banks that provide support to families managing FA. To this end, it should never be assumed that a family has safe and sufficient internet access via which they could easily download recommended FA resources. If families indicate a preference of hardcopies, printed copies of downloads should be provided to them prior to leaving the HCP’s office.

Of note, parents of children with FA may carry a dual educational burden: (1) seeking ongoing education for themselves and (2) educating others, such as family members, friends, teachers, and community leaders, in order to keep their child safe. This work is time- and emotionally-intensive, and yet may serve to promote an adaptive caution and vigilance needed in all settings to facilitate a child’s safe participation in developmentally appropriate activities.

Food Allergy Anxiety Management

While many patients and their families commonly describe anxiety attributable to FA [1, 70], some FA-associated anxiety may be appropriate or adaptive. Patients may be reassured to know that appropriate levels of anxiety may prompt behaviors such as label reading, bringing “safe” foods from home, and carrying an EAI. Indeed, as some authors suggest, “the elimination of mild anxiety may lead to more risky behaviors” [71].

Patients and families with FA may experience generalized anxiety, FA-related anxiety, or both [1, 22. 70]. Routine screening for FA-related psychosocial disorders, including FA-related anxiety, should be incorporated into clinical practice. In recent years, new instruments to facilitate such screening have been developed, including those intended for children (ages 8–18 years [44] and parents) [44-46]. Routine administration and longitudinal tracking of reported anxiety levels may glean insight into increasingly maladaptive anxiety (which could limit behaviors and activities that could be navigated safely, given appropriate precautions) or the elimination of any anxiety (which may contribute to reduced behaviors that contribute to safe FA management).

Connecting Patients to Resources

Both patients and caregivers may benefit from FA support groups and patient advocacy groups. HCP are encouraged to become familiar with those in their area. It is important that the HCP assess the quality of support provided by each group, including the training of the group’s leadership, the rigor with which information is shared, and whether content is evidence-based and/or medically reviewed. While many patient groups adhere to such standards, a recent American study provided evidence that only a minority of social media pages on FA contained patient education information [72]. In the absence of guidance from their HCP, patients and their families may seek out incorrect or outdated information [73].

Referral to a mental HCP with expertise in FA may be appropriate for some patients. The need for this HCP to have expertise in FA cannot be overstated, as many patients and families who experience negative psychological effects of FA may not present with such effects generally [70].

Peer Mentorship

Many FA clinics do not have dedicated psychology support for their patients [41, 59, 74], and there is demand for expert-delivered training programs [75]. Patients may seek private psychological services, which often carry out-of-pocket costs, thereby systematically excluding families for whom these costs are financially prohibitive. This represents a major gap in the ability to provide psychological support. Yet, among children in underserved populations, increased anxiety has been reported among those with versus without FA [76],

Online peer support groups may hold promise for those unable to access FA education and support within clinical settings. Among children aged 7–11 years who completed an eight session peer-to-peer mentorship course, FA confidence, which included comfort reaching out to others about their FA and seeking FA-related support, increased significantly, even when children had high baseline levels of FA competence [77]. Parents also reported seeing improvements in their child’s FA confidence, even though parents themselves were not directly involved in the program [77]. Elsewhere, longer duration (6 months) hybrid peer-mentor interventions directed toward parents of children < 5 years with allergist-diagnosed FA were found to be very or extremely acceptable to mentees and resulted in improved FA knowledge and a trend toward improved FA QOL [54]. An online peer support program has also been shown to helpful in that teens have reported feeling less alone and developing friendships through the program [78].

Emerging Issues

Early Allergen Introduction

Results of randomized controlled trials have led to recommendations for early introduction of food allergens, particularly peanut and egg, to prevent the development of FA in all infants [79, 80]. Current guidelines also advise against delaying introduction of other potentially allergenic foods and encourage incorporating a diverse range of foods into infants’ diets to foster FA prevention [81]. Families may experience challenges with consistent incorporation of allergenic foods into infants’ diets, including confusion around changing guidelines, practical barriers (e.g., food preparation issues and time demands, daycare not allowing the food), and constraints around cost and availability of foods [2, 82, 83]. Caregivers may experience psychosocial burden associated with infant food refusal (e.g., swallowing issues, dislike of taste, illness), anxiety and uncertainty about allergic reactions and intolerances in the child, and concerns about accidental exposures/reactions in another family member with FA [82-84]. Non-White race and lower maternal QOL have been identified as predictors of challenges with adherence to early introduction recommendations, and White children are more likely to be introduced to allergens early than non-White children [85, 86]. Mental health professionals may play an important role in reducing the psychosocial burden of early introduction, through management of caregiver anxiety, problem-solving to address lifestyle barriers, and reinforcement of positive feeding practices that are aligned with families’ cultural practices. All providers should screen for food insecurity and access to infant-safe forms of allergenic foods [87].

Sociodemographic Characteristics and Social Determinants of Health

Most research investigating the psychosocial impact of FA has been conducted with White participants with higher educational degrees who have higher household incomes and is thus not adequately generalizable to or representative of patients and families affected by FA [88]. One study conducted with a sample of predominantly Black and/or Hispanic and lower-income children and their caregivers found higher rates of child anxiety symptoms, particularly social anxiety and rejection fears, among children with FA than among children without FA; no differences were found in child depressive symptoms or in caregiver depression or anxiety symptoms [76]. Another study aimed at specifically evaluating bullying experiences of Black and White children with FA found that while there were no substantial racial differences in FA-related bullying, Black children experienced non-FA-related bullying twice as frequently as White children and were more likely to experience nervousness and worry than White children [89]. There are pervasive health disparities in FA medical care and management, with minoritized racial (particularly Black) and ethnic groups and lower income populations experiencing higher rates of FA-related anaphylaxis and emergency department visits, lower rates of filled epinephrine prescriptions and allergy specialist follow-up, and shorter duration of follow-up allergy care [40, 90, 91]. Identifying as a minoritized race or ethnicity, lower income, and lower level of educational attainment has been associated with lower FA knowledge [92, 93]; patients and families with more limited health literacy and without access to education in their primary language may face particular challenges in obtaining information necessary for effective FA management. Disparities that place underserved groups at increased risk of allergic reactions could also increase risk for psychosocial outcomes such as FA-related anxiety and post-traumatic stress [94, 95], although this has not been directly investigated. FA is associated with increased risk of household food insecurity, with minoritized and lower income groups reporting less access to often costly allergen-free foods, thus further increasing FA burden for these populations [4, 96, 97] and increasing risk for reduced FA QOL and negative emotional and behavioral outcomes [4, 98]. The Food Equality Initiative found at https://www.foodequalityinitiative.org/ provides helpful resources for patients and families.

Conclusions, Limitations, and Future Directions

FA has a profound impact on the daily life of children, parents, and caregivers. It is encouraging that awareness of the psychosocial challenges of FA in medical and lay communities is growing, and empirical research into this area is expanding. However, research findings may not be generalizable to patients of minoritized racial or ethnic groups or lower socioeconomic status, to patients outside of North America and Europe, and to non-female caregivers [88]. Additional studies into the experiences of more racially, ethnically, socioeconomically, and geographically diverse patients and families are needed to further advance our understanding of the psychosocial implications of living with FA. It is imperative that health care providers assess the psychosocial functioning of patients and families and provide reliable education, resources, and support to optimize QOL. We anticipate that the resources and measures offered here will facilitate screening and provide valuable education for patients and families with FAs.