Psychological support needs for children with food allergy and their families: A systematic review.

This systematic review aimed to review the evidence for psychological support for children with food allergies and their families, identify effective psychological interventions, and highlight the support needs for this group. A systematic search was undertaken across six databases (up to October 2023). Articles were checked by three reviewers for inclusion. Study data were extracted, and quality was assessed using the Mixed Methods Appraisal Tool. A narrative synthesis was undertaken. A total of 11 papers were included (n = 838 participants). Intervention types were based on cognitive behavioral therapy (CBT; n = 7); psycho-education (n = 1); peer mentoring (n = 1); self-regulation theory (n = 1); and coping (n = 1). Two interventions were for children only, three were for children and parents and six for parents only. Cognitive behavioral therapy-based interventions with highly anxious parents or children or those facilitated by a psychologist showed significant improvements with moderate-to-large effect sizes. The one self-help CBT-based online program showed no effects. Other intervention types reported mainly trends in improvement due to small sample sizes. Most interventions were aimed at supporting children or parents in day-to-day management of food allergy, measuring outcomes such as quality of life, self-efficacy, anxiety, worry, and depression. One intervention was designed to assist with oral immunotherapy outcomes. The majority of the studies had small sample sizes and were feasibility or proof-of-concept studies. Available research evidence points to effectiveness of facilitated CBT-based interventions for those that have high food allergy-related anxiety, but as many studies have small sample sizes and few report effect sizes, no firm conclusions can yet be drawn. A stepped care approach is likely to be useful for this population. Research using large interventional designs, particularly for children and adolescents, are needed.

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

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. 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.

Anxiety among youth with food allergy.

OBJECTIVE: Anxiety is among the major psychological concerns for children living with food allergy (FA). Yet research exploring the variables driving anxiety symptoms in FA remains sparse, and most studies still utilize homogeneous samples to assess anxiety symptoms. The current study seeks to evaluate the rates of clinically significant anxiety symptoms among a diverse sample of youth with FA and examine whether a heightened risk perception of FA outcomes and FA burden (vs. FA medical history) is associated with anxiety in youth. METHODS: 94 youth ages 10-14 and their parents were recruited from FA clinics at a mid-Atlantic children's hospital. Both youth and parents completed demographic and FA medical history questionnaires, the Screen for Child Anxiety Related Emotional Disorders, and the Food Allergy Independent Measure as part of a longitudinal study about FA adjustment and adherence. RESULTS: Over a third (37%) of youth scored above clinical cut-offs for overall anxiety symptoms. At least 25% of youth reported clinically significant scores on panic disorder, generalized anxiety, social anxiety, separation anxiety, and school avoidance subscales. Perception of risk of adverse FA outcomes and burden-but not FA medical history-were associated with total anxiety, generalized anxiety, panic disorder, and school avoidance symptoms, but not social anxiety and separation anxiety. Having more FAs was associated with higher social anxiety scores but not with other anxiety subscales. CONCLUSIONS: Youth with FA might benefit from psychosocial interventions that address FA risk perception management and promote appropriate FA vigilance to cope with anxiety symptoms.

Psychosocial functioning in pediatric food allergies: A scoping review.

The psychosocial burden of food allergy (FA) can significantly affect the lives of pediatric patients and their families. A comprehensive understanding of the state of the literature on psychosocial functioning is imperative to identify gaps that may affect clinical care and future research. This review characterizes the current literature on psychosocial functioning in pediatric patients with FA and their caregivers, siblings, and families. A literature search of 5 databases (PubMed, Ovid MEDLINE, PsycINFO, Web of Science, and Embase) was conducted to identify original research articles and abstracts on psychosocial functioning of patients with FA who were aged 0 to 18 years and their caregivers, siblings, and families. A total of 257 studies met the inclusion criteria. The majority of studies examined child or caregiver psychosocial functioning, with child and caregiver quality of life examined most frequently. Most studies utilized quantitative and cross-sectional methods and inconsistently reported participant race and ethnicity. Existing research on psychosocial functioning in pediatric FA may not be generalizable to patients of color and families and siblings. Future research should diversify recruited samples regarding race, ethnicity, and country of origin; examine psychosocial functioning longitudinally; examine constructs beyond quality of life; and adopt a biopsychosocial approach by considering the interplay among psychosocial functioning, disease burden, and social contexts.

Growing up with allergies: Transitioning from adolescence to adulthood.

Allergic disease management for adolescents and young adults requires consideration of unique psychosocial challenges and opportunities. Erik Erikson's model for the Stages of Psychosocial Development is a useful lens through which we can understand adolescent and young adult experiences with allergic and immunologic disease, particularly with regard to identity and relationship development. It is important to provide anticipatory guidance for patients who are transitioning environments (eg, home to college), with attention to the anxiety-provoking demands for increased responsibility on top of new stressors such as academic and vocational demands. It is critical that health care professionals use an empathetic, shared decision-making approach regarding the emotional impact of allergy on a patient's social engagement. A patient's ability to develop positive lifelong habits is also shaped by their environment's "culture of wellness," and clinicians can encourage habits to promote healthy choices and effective disease management. Social media provides opportunities and challenges as a conduit for both social connection and possible misinformation. Overall, allergic disease management in adolescents and young adults is a "high-risk, high-reward" period of time-and with awareness, anticipation, and proactive action, health care professionals can better serve patients by leveraging this transitional period to promote positive approaches to management of allergies and asthma, trusting relationships, and personal responsibility.

Food Allergy-Related Bullying Among Children and Adolescents.

OBJECTIVE: Food allergy (FA) management requires youth to avoid allergens and carry emergency medication which can impact participation in social activities. Previous research indicates that some youth experience FA-related bullying, but many studies are limited by single-item assessment methods and a narrow definition of bullying. This study describes FA-related bullying among a diverse cohort of youth with FA and evaluates parent-child disagreement and bullying assessment methods. METHODS: Youth ages 9-15 years (n = 121) diagnosed with an IgE-mediated FA and their primary caregivers were recruited from pediatric FA clinics to complete surveys about their FA-related bullying experiences. Descriptive statistics were conducted to assess overall FA-related bullying and McNemar tests were utilized to assess disagreement among parent-child report and between multi-item and single-item assessment methods. RESULTS: Seventeen percent and 31% of youth reported FA-related bullying on single-item and multi-item assessments, respectively. Twelve percent of parents reported their child had experienced FA-related bullying. Youth reported overt physical (51%), overt non-physical (66%), and relational FA-related bullying (20%). FA-related bullying was most common among classmates. Assessment method significantly affected the rates of FA-related bullying reported by youth, and parents and youth only agreed on FA-bullying experiences when assessed via the single-item measure. CONCLUSIONS: A subset of a diverse sample of youth with FA reported FA-related bullying. Clinicians should use multi-item assessment methods and ask both parents and children about their experiences to fully capture the experiences of families managing FA. School policies that facilitate FA safety and social inclusion should be promoted. CLINICAL TRIAL REGISTRATION: N/A.

Self-Efficacy Among Caregivers of Children With Food Allergy: A Cohort Study.

OBJECTIVE: The prevalence of pediatric food allergy (FA) is increasing and, due to early disease onset, requires significant caregiver management that is associated with psychosocial burden. Caregiver perception of how they cope and handle FA-related events (self-efficacy) has been linked to psychosocial outcomes in racially/geographically homogenous samples. This study explores FA-related caregiver self-efficacy and associations with FA-related caregiver quality of life (QoL) in a diverse cohort. METHODS: Caregivers of children, diagnosed with IgE-mediated FA who identified as non-Hispanic Black or White, were recruited from U.S. academic allergy clinics. Caregivers completed demographic and medical questionnaires, the Food Allergy Self-Efficacy Scale for Parents (FASE-P), Food Allergy Independent Measure-Parent Form (FAIM), and the Food Allergy Quality of Life-Parental Burden (FAQL-PB). Bivariate and multivariate associations estimated relationships between study variables. RESULTS: Caregivers of 365 children (Mage = 5.8 years, 62.2% male, 31.1% Black) were enrolled. Caregivers reported high FA self-efficacy (M = 82.06/100), moderate perceptions of risk/FA severity (FAIM: M = 3.9/7), and some limitations on the FAQL-PB (M = 3.9/7). Self-efficacy was related to lower perceptions of risk/FA severity across all demographic groups (r = -.42, p < .001). Caregivers who reported higher self-efficacy reported better QoL, particularly Black caregivers (r = .67). CONCLUSIONS: In this sample of caregivers of children with FA, greater self-efficacy was related to improved QoL regardless of sociodemographic factors. Caregivers' perception of risk was lower for those with greater self-efficacy. Future research into the impact of FA management on QoL among diverse caregivers is needed.

Assessing daily food allergy self-management among adolescents using a 24-hour recall interview.

BACKGROUND: Severe food allergic reactions can be life-threatening or fatal and are experienced by up to 40% of children with food allergies, with adolescents at greatest risk. There are no comprehensive measures to assess food allergy management behaviors that could prevent allergic reactions. OBJECTIVE: To describe food allergy self-management behaviors as reported by adolescents on a 24-hour recall measure and identify related factors. METHODS: Adolescents aged 10 to 14 years with immunoglobulin E-mediated food allergy completed the Food Allergy Management 24-Hour Recall as an interview. Participants answered questions on each food they ate on the previous day and food allergy self-management behaviors. RESULTS: Participants were a diverse sample (28% White) of 101 adolescents (mean age = 11.80 years; 53% male sex). Most meals and snacks (76%) were observed by adults. Epinephrine autoinjectors (EAIs) were reportedly available for almost all meals and snacks (93%). Almost all foods had been eaten before (95%) and were verified as allergen free (92%). Furthermore, 35% of the time, past experience with the food was the only method used to verify safety. Child age, number of food allergies, or time since allergic reaction was not related to self-management behavior. EAI availability and ingredient verification were most common at home and in school; adult observation was least likely in the home. CONCLUSION: Adolescents reported that EAIs were frequently available, but they relied on past experience with food to determine safety. Appropriate assessment of food safety should be a primary intervention target. The Food Allergy Management 24-Hour Recall may be a useful tool to assess and track food allergy self-management.

Food allergy-related bullying and associated peer dynamics among Black and White children in the FORWARD study.

BACKGROUND: The experiences of Black children with food allergy (FA) are not well characterized, particularly with respect to bullying victimization and other psychosocial outcomes. OBJECTIVE: To evaluate bullying experiences of Black and White children with FA, including associations with peer relationships, anxiety, and school policies. METHODS: Surveys were administered to parents of 252 children with physician-diagnosed FA enrolled in the multisite FORWARD cohort. The surveys assessed demographics, atopic disease, bullying victimization, and school FA management practices and policies. Descriptive statistics of bullying by race were compared by χ2 tests. Multiple logistic regression analyses adjusting for race, age, parental education, household income, child sex, and multi-FA compared adjusted probabilities of bullying victimization by school policies. RESULTS: Nearly 20% of school-aged children were bullied for FA with no substantial racial differences overall, though for children ages 11 years and up, White children reported higher rates of bullying. However, Black children experienced non-FA-related bullying twice as frequently as White children (38.6% vs 17.7%; P = .002). Most of the caregivers (85.7%) who intervened in their child's bullying reported that it was helpful. Among parents, 17.3% reported that they were teased or bullied owing to their child's FA. More than half of the respondents (54.8%) reported that some allergens are banned from their child's school, most typically peanut. In schools banning peanuts, FA-related bullying was less frequently reported by all students who have food allergy. CONCLUSION: Bullying owing to FA is common, and caregivers, medical professionals, and school administrators can help reduce bullying by screening for bullying and supporting and educating school policies.

The Food Allergy Parent Mentoring Program: A Pilot Intervention.

OBJECTIVE: Parents of young children with newly diagnosed food allergy (FA) are at risk for poor psychosocial outcomes due to FA's life-threatening nature and demanding management routines. Presently, there are no interventions to support FA parents during this adjustment phase. This single-arm pilot study explores the feasibility, acceptability, and preliminary efficacy of a novel intervention using peer mentorship to improve psychosocial functioning in parents of young children with newly diagnosed FA. METHODS: Parent mentors were trained in mentorship and ethics and then matched with a mentee for a 6-month intervention period. Mentees, parents of children (under age 5 years) diagnosed with FA within 1 year, completed baseline and follow-up questionnaires to assess demographic and medical characteristics, FA knowledge, quality of life, self-efficacy, and social support and a program evaluation. Follow-up focus groups with mentors and individual interviews with mentees were conducted. RESULTS: Participants were 8 mentors and 10 mentees (Mage = 36.60 years, 80% Caucasian) of children ages 0-3 years (Mage = 16.15 months; 60% male). Mentees reported high acceptability for the intervention in program evaluation and interviews, noting improvements in their social support, FA-related stress, confidence in FA management, and positive changes in FA parenting behaviors. CONCLUSION: This study supports the use of a peer mentorship program to support parents of children with newly diagnosed FA. Future research is needed to determine how to scale this intervention to meet the needs of a large medical division.

Mealtime behavior among parents and their young children with food allergy.

BACKGROUND: Food allergies are increasingly prevalent in the pediatric population. Balancing allergen avoidance with the promotion of healthy eating behaviors can be challenging for families. OBJECTIVE: To characterize mealtime behaviors among parents of young children with food allergy. METHODS: Seventy-four parents of young children with food allergies (≤7 years of age) completed measures of mealtime behavior, perceptions of food allergy risk and severity, pediatric parenting stress, and food allergy-related quality of life. Mealtime behavior reports were compared with published data regarding typically developing children, young children with type 1 diabetes, and children with diagnosed feeding disorders (with or without related medical factors). RESULTS: Parents of young children with food allergies reported frequent mealtime concerns. Specifically, they reported significantly more mealtime behavioral concerns than typically developing peers, comparable mealtime behavioral concerns to young children with type 1 diabetes, and significantly fewer mealtime behavioral concerns than children with diagnosed feeding disorders. Parental mealtime concerns were positively correlated with other parent perceptions of food allergy, such as risk of allergen exposure, illness-related parenting stress, and food allergy-related quality of life. CONCLUSION: Young children with food allergy and their parents are more likely to exhibit mealtime behavioral concerns than typically developing peers and their parents. Future research should investigate the effect of food allergies and maladaptive mealtime behaviors on children's nutrition to provide clinical guidelines for parents who may benefit from psychosocial and/or nutritional support.

The emotional, social, and financial burden of food allergies on children and their families.

BACKGROUND: As the prevalence of food allergy has risen among children and young adults, both in the United States and around the world, investigators have become increasingly aware of the daily emotional toll on patients and their families of living with food allergy. OBJECTIVE: To review the literature regarding the emotional, social, and financial impact of food allergy on pediatric patients and their families, and to provide evidence-based suggestions for clinicians on how to most effectively address these issues. METHODS: A literature search was performed to identify relevant articles related to the emotional, social, and financial impact of food allergy. RESULTS: There is a growing body of literature that demonstrates that living with food allergy adversely affects patients and families in the domains above. CONCLUSION: Food allergy can significantly impact pediatric patients and their families in all areas of their lives. Clinicians should be aware of these issues when working with these families. Implementing a multidisciplinary approach can help families cope with emotional, social, and financial burdens.

Development of a Tool to Measure Youths' Food Allergy Management Facilitators and Barriers.

OBJECTIVE: This study's aims are to identify factors related to allergen avoidance and epinephrine carriage among youth with food allergy, develop a tool to measure food allergy management facilitators and barriers, and investigate its initial reliability and validity. METHODS: The Food Allergy Management Perceptions Questionnaire (FAMPQ) was developed based on focus groups with 19 adolescents and young adults with food allergy. Additional youth with food allergy (N = 92; ages: 13-21 years) completed food allergy clinical history and management questionnaires and the FAMPQ. RESULTS: Internal reliability estimates for the FAMPQ Facilitators and Barriers subscales were acceptable to good. Youth who were adherent to allergen avoidance and epinephrine carriage had higher Facilitator scores. Poor adherence was more likely among youth with higher Barrier scores. CONCLUSIONS: Initial FAMPQ reliability and validity is promising. Additional research is needed to develop FAMPQ clinical guidelines.

Factors Associated with Recruitment and Retention in Randomized Controlled Trials of Behavioral Interventions for Patients with Pediatric Type 1 Diabetes.

The purpose of this study is to describe recruitment and retention experiences from three behavioral randomized controlled trials conducted among youth with type 1 diabetes. Eligibility, recruitment, and retention data were examined. Study-specific differential study participation and loss-to-follow-up analyses assessed the relations of patient characteristics with treatment completion and 6-month retention. Multivariable logistic regression identified factors independently associated with 6-month retention among all participants. Approximately 70-92 % of randomized participants completed treatment and 58-90 % were retained for follow-up. Older patients and non-Caucasian patients were less likely to enroll. Treatment completion and 6-month retention were less likely among youth who were older, had worse baseline glycemic control, lower household income, and/or unmarried parents. Some subgroups of patients are less likely to participate in research and are more susceptible to loss-to-follow-up. More work is needed to understand the facilitators and barriers to research participation.

Parenting and independent problem-solving in preschool children with food allergy.

OBJECTIVE: To examine autonomy-promoting parenting and independent problem-solving in children with food allergy. METHODS: 66 children with food allergy, aged 3-6 years, and 67 age-matched healthy peers and their mothers were videotaped while completing easy and difficult puzzles. Coders recorded time to puzzle completion, children's direct and indirect requests for help, and maternal help-giving behaviors. RESULTS: Compared with healthy peers, younger (3- to 4-year-old) children with food allergy made more indirect requests for help during the easy puzzle, and their mothers were more likely to provide unnecessary help (i.e., explain where to place a puzzle piece). Differences were not found for older children. CONCLUSIONS: The results suggest that highly involved parenting practices that are medically necessary to manage food allergy may spill over into settings where high levels of involvement are not needed, and that young children with food allergy may be at increased risk for difficulties in autonomy development.

The impact of parents' sleep quality and hypoglycemia worry on diabetes self-efficacy.

Parents of young children with type 1 diabetes (T1D) may experience poor sleep quality, possibly impacting their confidence in T1D management. This study investigated sleep characteristics among parents of children with T1D and relationships among parents' sleep quality, hypoglycemia worry, and diabetes self-efficacy. As part of baseline assessment for a randomized clinical trial (RCT) to promote parental management of T1D, 134 parents of children ≤ age 6 reported on demographics, parent sleep characteristics, hypoglycemia worry, and diabetes self-efficacy. Parents reported they slept less time than recommended by the National Sleep Foundation and endorsed greater global sleep problems than standardized norms of healthy adults; one third of parents reported their overall sleep quality was "fairly bad" or "very bad." Hypoglycemia worry and parents' sleep quality were both significantly related to diabetes self-efficacy, but parents' sleep quality did not mediate the relationship of hypoglycemia worry and diabetes self-efficacy. Many parents experience disrupted sleep that impacts their perceived ability to perform T1D management. Interventions designed to improve parental T1D self-efficacy should consider sleep and concerns about children's hypoglycemia.