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.

The Development of Age-Based Food Allergy Educational Handouts for Caregivers and Patients: A Work Group Report of the AAAAI Adverse Reactions to Foods Committee.

BACKGROUND: Food allergy education is an ongoing process that must address unique safety concerns and psychosocial challenges at each developmental stage. Families require reliable information that is targeted to specific developmental stages to support the integration of food allergy management into daily life. OBJECTIVE: The purpose of this project was to develop age-specific, evidence-based patient education handouts with practical recommendations for managing and coping with food allergies at different developmental stages. METHODS: Handout content was based on: (1) practice guidelines for food allergy management; (2) literature addressing psychosocial and educational needs of patients with food allergy and their caregivers; and (3) clinical experience of the project team. Fifty-seven caregivers of patients (aged 0-21 years) with food allergy and 2 young adults with food allergy reviewed a draft of the handouts and completed an online survey to assess handout acceptability and usability and identify areas for improvement. Handouts were revised based on participant feedback. RESULTS: The majority of participants (79%) rated the amount of information in the age-specific handouts as "just right," versus "not enough" (9%) or "too much" information (12%). Sixty-three percent reported that they would be "very likely" to use the handouts as a resource and 35% "somewhat likely." Almost all participants (88%-100% by item) agreed that the handouts used elements of plain language writing and clear communication. CONCLUSION: Caregivers rated the age-based food allergy education handouts as understandable and useful. We anticipate that these handouts could be used during health care visits and directly accessed online by families.

The Psychosocial Impact of Food Protein-Induced Enterocolitis Syndrome.

BACKGROUND: Little is known about the psychosocial impact of food protein-induced enterocolitis syndrome (FPIES). OBJECTIVE: To characterize quality of life, stress, worry, anxiety, and self-efficacy in caregivers of children with FPIES and affected children, and determine risk factors for increased psychosocial burden. METHODS: Surveys completed by caregiver-members of the International FPIES Association at a conference (n = 42) and online (n = 368) were analyzed. RESULTS: There was significant burden, stress, worry, and anxiety among caregivers. There was a positive correlation among Food Allergy Quality of Life-Parental Burden, Perceived Stress Scale-10, Penn State Worry Questionnaire, and Beck Anxiety Inventory scores, and these were negatively associated with Food Allergy Self-Efficacy for Parents (FASE-P) scores. Lower income was associated with poorer caregiver health-related quality of life (HRQoL) (P = .039) and lower FASE-P (P = .028). Greater number of food groups avoided correlated moderately with poorer HRQoL (r = 0.386; P < .001), higher anxiety among preschoolers (r = 0.262; P = .013) and parents (r = 0.594, P = .025). Avoiding cow's milk due to FPIES was associated with poorer caregiver HRQoL (P < .001), higher stress (P = .001), and lower FASE-P (P = .013). Caregivers whose child was not attending daycare/school due to FPIES had poorer HRQoL (P < .001), higher stress (P < .014), and worry (P = .004). Compared with published cohorts of caregivers of children with IgE-mediated food allergy, the burden of FPIES on caregivers was significantly higher (mean = 3.4 vs 3.0; P < .001) and self-efficacy was significantly lower (mean = 63.9 vs 76.1; P < .001). CONCLUSIONS: There is increased stress, worry, anxiety, and reduced HRQoL and self-efficacy among caregivers of children with FPIES and increased general anxiety among preschoolers. Additional research is needed to inform effective psychosocial interventions.

A Slice of Food Protein-Induced Enterocolitis Syndrome (FPIES): Insights from 441 Children with FPIES as Provided by Caregivers in the International FPIES Association.

BACKGROUND: Food protein-induced enterocolitis syndrome (FPIES) is a non-IgE-mediated gastrointestinal food allergy. There is little known about the demographic characteristics, food triggers, and risk factors for FPIES. OBJECTIVE: To characterize the demographic characteristics, food triggers, risk factors, and management in children with FPIES. METHODS: We retrospectively analyzed surveys completed by 410 caregiver-members of the International FPIES Association, both at a conference for families affected by FPIES and online. RESULTS: Most of the children were female (50.7%), white (86.2%), and atopic (54.8%), with a median age of 2 years (ranging from 2 months to 19 years). The most common food groups avoided were grains (60.0%), cow's milk (52.4%), vegetables (42.7%), and fruits (38.0%). Avocado was the most commonly avoided fruit. Avoiding avocado was associated with increased likelihood of avoiding banana (P < .001). Of these children, 69.4% avoided at least 2 food groups because of FPIES, and 20.3% had a first-degree relative with FPIES. Having a first-degree relative with FPIES was associated with increased likelihood of avoiding multiple food groups (P = .035). CONCLUSIONS: The most common food group avoided was grains, consistent with recent literature. Avocado avoidance was higher than previously reported, and this is the first report of an association between avocado and banana avoidance in FPIES. Avoiding multiple food groups because of FPIES was more common than previously reported. A large proportion of children in our cohort had first-degree relatives with FPIES, and, furthermore, having a first-degree relative with FPIES was significantly associated with the affected child avoiding multiple food groups.

Introduction to the special issue on child and family health: the role of behavioral medicine in understanding and optimizing child health.

Health promotion during early life and childhood can reduce the prevalence and impact of acute and chronic health conditions later in life. Research regarding factors that influence child and family health, prevention, and intervention programs that address them, and policies that promote implementation of best practices are needed to efficiently and effectively address the multi-faceted, biopsychosocial influences on child health, especially among youth from underserved backgrounds. The current special issue dedicated to child and family health offers a series of articles that illustrate how explanatory studies and targeted intervention programs for children, families, health care providers, and communities can be used to improve child health. Articles in this special issue are organized into three areas related to child and family health: (i) diet and nutrition, (ii) cancer prevention and control, and (iii) social determinants of health and health care. The articles included in this special issue underscore that behavioral medicine practitioners, researchers, and policy makers are well poised to lead innovative efforts to promote child health across clinical, community, health care, and population settings.

Parent Employment and School/Daycare Decisions among Parents of Young Children with Type 1 Diabetes.

This study explored the employment and school/daycare experiences of parents of young children with type 1 diabetes (T1D). Parents (n=134) of young children with T1D (ages 1-6) responded to open-ended questions. Responses were systematically reviewed to identify themes. Four parent employment themes were identified: work cessation/reduction, employment flexibility, significant career impact, and financial pressure. Three school/daycare attendance themes were identified: school/daycare structure and setting, previous experience with T1D, and school/daycare importance. Insulin regimen, child age, and family income were related to parents' decisions. Parents may benefit from clinical programs that assist them with employment and school/daycare decisions.

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.

Food allergy: psychosocial impact and public policy implications.

Given its increasing prevalence and potential severity, food allergy not only negatively impacts the health and quality of life of affected individuals but also carries a significant economic burden. To address these problems, a community approach including efforts to increase awareness of food allergy among the general public and the implementation of appropriate public policies to keep affected individuals safe is required. This chapter reviews the general public's knowledge and perceptions of food allergy, the disease's psychosocial impact on affected individuals, and the current state and future directions of food allergy public policy.

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.

Relations among school/daycare functioning, fear of hypoglycaemia and quality of life in parents of young children with type 1 diabetes.

AIMS AND OBJECTIVES: To investigate the type 1 diabetes-related school/daycare experiences of parents of young children and to examine the relationship among child school/daycare functioning, parent fear of hypoglycaemia and parent type 1 diabetes-related quality of life. BACKGROUND: Parents of young children who attend school/daycare must rely on others for daily type 1 diabetes management. Worry about school/daycare type 1 diabetes management may cause parental distress and contribute to diminished parent quality of life. Parental concerns about type 1 diabetes management in young children in the school/daycare setting have not been well described in the literature. DESIGN: Descriptive correlational and cross-sectional parent report of questionnaires design. METHODS: As part of a randomised controlled trial for parents of young children with type 1 diabetes, 134 parents completed self-report measures at baseline. Data included demographic, school/daycare, and medical information, parent reports of child school/daycare functioning, parent fear of hypoglycaemia and parent type 1 diabetes-related quality of life. RESULTS: Parents of younger children, children on a more intensive medical regimen and children who had experienced type 1 diabetes-related unconsciousness or seizures had more school/daycare concerns. Parents who perceived their children had higher school/daycare functioning had less fear about hypoglycaemia and reported better type 1 diabetes-related quality of life. School/daycare functioning and fear of hypoglycaemia were significantly associated with parent type 1 diabetes-related quality of life. CONCLUSIONS: Parents' concerns about school/daycare functioning and fear of hypoglycaemia play an important role in parents' type 1 diabetes-related quality of life. RELEVANCE TO CLINICAL PRACTICE: Members of the healthcare team should be aware of concerns related to children attending school/daycare and provide additional support as warranted.

Maternal intolerance of uncertainty, anxiety, and adherence with food challenge referrals.

Anxiety regarding food challenges may serve an important role in parents' decisions to adhere to their child's food challenge referrals. This study examined the role of intolerance of uncertainty in food challenge referral adherence by assessing state/trait anxiety among mothers whose children were referred for a food challenge. Mothers whose children passed a food challenge reported significant decreases in anxiety regarding allergic reactions, but intolerance of uncertainty did not predict adherence. Trust in the physician was a primary reason mothers attended the food challenge, suggesting that physicians should consider the impact of the physician-patient relationship when treating these families.

Sleep Behaviors and Parent Functioning in Young Children With Type 1 Diabetes.

This study evaluates sleep characteristics among young children with type 1 diabetes and associations with parent sleep and emotional functioning and diabetes care. Study participants included twenty-four parents of young children with type 1 diabetes (ages 2-5) enrolled in a pilot study of a randomized-controlled trial. Child sleep characteristics were within normal limits. However, increased child bedtime resistance and behavioral insomnia were related to greater parent stress, anxiety, and depression and use of an intensive insulin regimen. Type 1 diabetes management may impact child and parent sleep as well as parent emotional functioning. Implications for practice are presented.