Ann Allergy Asthma Immunol xxx (2016) 1e6
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Mealtime behavior among parents and their young children with food allergy Linda Jones Herbert, PhD *, y; Priya Mehta, BA y; Hemant Sharma, MD, MHS *, y * Division y
of Allergy and Immunology, Children’s National Health System, Washington, DC The George Washington University, School of Medicine and Health Sciences, Washington, DC
A R T I C L E
I N F O
Article history: Received for publication August 4, 2016. Received in revised form November 8, 2016. Accepted for publication December 1, 2016.
A B S T R A C T
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 allergyerelated 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, illnessrelated parenting stress, and food allergyerelated 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. Ó 2016 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.
Introduction Food allergies are increasingly prevalent in the pediatric population, affecting an estimated 8% of children in the United States.1,2 Food allergy diagnosis can be life-altering for the child and family; a key component of treatment is allergen avoidance to prevent potentially life-threatening allergic reactions.3e5 In early childhood, parents are often responsible for all aspects of food allergy management because children may be too young to understand the complexities of allergen avoidance and lack the skills necessary to implement food allergy management.6 Thus, food allergy management can be tedious, time-consuming, and stressful for parents.6e9 Further complicating food allergy management is that parents are responsible for supporting their child’s normal developmental needs, such as promoting healthy eating habits, social Reprints: Linda Jones Herbert, PhD, Division of Allergy and Immunology, Children’s National Health System, 111 Michigan Ave NW, Washington, DC 20010; E-mail:
[email protected]. Disclosures: Authors have nothing to disclose.
skills, and autonomy.10e12 Finding a balance between safe food allergy management and engagement in normal developmental tasks may be challenging. A primary developmental task during early childhood is the establishment of healthy eating habits. Mealtime behavioral concerns are very common in healthy, typically developing children. Approximately 25% to 45% of parents of typically developing children report concerns with their child’s feeding and mealtime behaviors, including disruptive child behaviors (eg, food refusal, food selectivity, getting up from the table).13e16 Many parents report anxiety about their child’s mealtime behaviors and use maladaptive techniques to encourage their child to eat.17 These behaviors may have unintended consequences, such as more or less food intake or lack of a varied diet, which may then contribute to inadequate or excess weight gain and/or inappropriate nutritional intake.17 Furthermore, behavioral problems at mealtime may increase parental stress and decrease quality of life. For families of children with chronic illnesses who require strict diet management, such as type 1 diabetes, mealtime behavioral
http://dx.doi.org/10.1016/j.anai.2016.12.002 1081-1206/Ó 2016 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.
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concerns are even more common than among families of typically developing children.18,19 These concerns may have consequences for illness-specific physiologic and psychosocial outcomes.20 For example, more frequent problematic child and parent mealtime behavior was significantly associated with poorer diabetes-related quality of life in a sample of parents of young children with type 1 diabetes.21 Given the need to focus on eating and food consumption similar to children with type 1 diabetes, children with food allergy may also be at greater risk for mealtime behavioral concerns than typically developing children. However, little is known about mealtime behavioral concerns among children with food allergy. Preliminary research indicates that food allergy patients may be overrepresented at feeding clinics compared with the general population,22 and feeding concerns are common among children diagnosed with cow’s milk allergy, food proteineinduced gastrointestinal allergies, and eosinophilic gastrointestinal disorders.23e25 However, no prior studies have examined mealtime concerns among children with a broader array of food allergies; therefore, it is unknown whether those concerns are increased compared with typically developing children or associated with increased parenting stress and/or poorer quality of life. The aim of this study is to characterize mealtime concerns among parents of young children with food allergy. To accomplish this aim, we (1) describe mealtime behavioral concerns among a sample of parents of young children with food allergy, (2) compare the mealtime concerns of parents in our sample with published data from 3 other samples (children with type 1 diabetes, children with diagnosed feeding disorders, and typically developing children), and (3) investigate the association of parents’ mealtime concerns with parenting stress and food allergyerelated quality of life. Methods Procedure This study was approved by the Children’s National Health System’s institutional review board. Participants were recruited during a 16-month period (March 2014 to June 2015). Primary caregivers of children 0 to 18 years old with at least one diagnosed food allergy (hereafter referred to as parents) completed an online clinical assessment of food allergyerelated psychosocial functioning as part of routine clinical care. Practitioners identified their patients who were diagnosed with food allergies at clinic appointments. Food allergies were diagnosed by allergists via one of several methods: skin prick testing, IgE testing, oral food challenge, or clinical history. Within a week of their child’s food allergy clinic appointment, parents received an e-mail asking them to complete a set of questionnaires about their child’s food allergy and their psychosocial functioning. The e-mail also included a link to a REDCap survey,26 an encrypted web-based application that is designed to support data capture for research studies. After completing questionnaires, parents reviewed an information page that indicated their deidentified responses would be included in a research database. Parents had the option to opt out of their inclusion in this database. Only research team members had access to the deidentified data that were entered into the research database. A waiver of documentation of consent was approved for this project. Participants did not receive incentives. Approximately 34% of all potential participants (N ¼ 303) completed the survey. Participants A total of 103 parents who received clinical care at an urban Mid-Atlantic food allergy clinic in a pediatric medical center completed the clinical assessment. Of these, 74 (72%) parents met the inclusion criteria: child age between 9 months and 7 years
(to be consistent with the feeding measure guidelines), diagnosis of at least one IgE-mediated food allergy by an allergist, access to the internet, and English fluency. No parents elected to opt out of including their responses in the deidentified research database. Measures Demographic questionnaire As part of the online survey, participants first completed a demographic and medical questionnaire developed by the study team that assessed child age, sex, race, and ethnicity and parent age, sex, and education level. Parents also reported diagnosis of peanut, tree nut, cow’s milk, egg, soy, wheat, fish, and/or shellfish allergy. Child mealtime behavior Parents completed the Behavioral Pediatrics Feeding Assessment Scale (BPFAS)15 to obtain parent report of children’s mealtime behavior and parents’ strategies for managing these behaviors. The BPFAS was developed for parents of children aged 9 months to 7 years. The measure includes 35 items regarding child behaviors (25 items) and parents’ behaviors and emotions (10 items) associated with meals. For each behavior, parents report the frequency on a 5-point Likert scale and indicate a dichotomous endorsement (yes/no) of whether the behavior is a problem for the parent. Six scores are derived from the BPFAS: child behavior frequency, child problem, parent behavior frequency, parent problem, total behavior frequency, and total problem. Higher scores indicate more concerns. The BPFAS has acceptable validity and reliability among typically developing populations.15 It has also been successfully used in pediatric chronic illness populations, such as those with type 1 diabetes, with satisfactory internal consistency.21,27 The Cronbach a values for this sample were 0.91 for the total behavior frequency scale and 0.93 for the total problem scale. Food allergy perceptions Parents’ perceptions regarding their child’s risk of allergen exposure, food allergy severity, and food allergy worry were assessed. Perceived risk of allergen exposure was rated on a 4-point Likert scale (0 indicating no chance to 3 indicating high risk), perceived food allergy severity was rated on a 100-point visual analog scale, and food allergyerelated worry was rated on a 100point visual analog scale. Parents provided a rating for each individual food allergy, and then composite variables were created as the mean of the individual food allergy ratings. Pediatric parenting stress Stress regarding parenting a child with a medical illness was assessed via the Pediatric Inventory for Parents (PIP).28 The PIP is a 42-item parent self-report measure. Parents rate the item’s frequency in the last week (1 indicating never to 5 indicating very often) and the level of difficulty associated with it on a 5-point Likert-type scale (1 indicating not at all to 5 indicating extremely). Frequency and difficulty ratings are summed for an overall total frequency score and a total difficulty score. Higher scores indicate greater pediatric parenting stress. The PIP has been used in diabetes samples and samples with other pediatric conditions.28e30 The Cronbach a values for this sample were 0.92 for the frequency scale and 0.95 for the difficulty scale. Food Allergy Quality of Lifeeparental burden Parents’ food allergyerelated quality of life was assessed using the Food Allergy Quality of LifeeParental Burden (FAQL-PB).31 The FAQL-PB is a 17-item measure that assesses the effect of food allergy on parents’ daily lives on a 7-point Likert scale (0 indicating not limited or troubled to 6 indicating extremely limited/troubled). A total score is derived by summing the items; higher scores
L.J. Herbert et al. / Ann Allergy Asthma Immunol xxx (2016) 1e6
indicate greater parental burden. This measure has been well validated.31,32 The Cronbach a for this sample was 0.94. Statistical Analysis All statistical analyses were based on the 74 participants who completed the online survey and were conducted using SPSS statistical software, 23rd edition (SPSS Inc, Chicago, Illinois). Preliminary descriptive statistics were generated for demographic and medical characteristics, the BPFAS, food allergy perceptions ratings, the PIP, and the FAQL-PB. Independent-samples t tests were conducted comparing the mean BPFAS scores of this sample to published BPFAS data from typically developing and clinical samples.15,21,33 Finally, Pearson Product Moment and Spearman r correlational analyses and a univariate regression analysis were conducted regarding the associations among demographic and medical characteristics, BPFAS scores, food allergy perceptions, PIP scores, and FAQL-PB scores.
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(SD) child mealtime problem score of 3.57 (4.69) (range, 0e18), a mean (SD) parent mealtime concerns score of 19.32 (5.28) (range, 11e36), and a mean (SD) parent mealtime problem score of 1.54 (2.16) (range, 0e9). Parents reported a mean (SD) total frequency score of 70.93 (16.67) (range, 41e127) and a mean (SD) total problem score of 5.11 (6.51) (range, 0e27) (Table 2). The BPFAS scores were significantly positively correlated with each other (P < .001 for all) but were not related to number of food allergies, child age, parent age, or parent educational level (P > .05). Parenting Stress and Food AllergyeRelated Quality of Life
Mealtime Behavior
Parents reported a mean (SD) total frequency score on the PIP of 78.98 (21.11) (range, 46e140) and a mean (SD) total difficulty score of 68.18 (22.16) (range, 42e144) (Table 2). The BPFAS scores were significantly positively correlated with PIP frequency and difficulty scores (P < .05 for all). Parents who reported greater mealtime concerns also reported greater parenting stress related to parenting a child with a medical illness. On the FAQL-PB, parents reported a mean (SD) score of 1.76 (1.18) (range, 0e5). The FAQL-PB scores were significantly positively correlated with the BPFAS scores; parents who reported greater mealtime concerns reported poorer food allergyerelated quality of life. Finally, the BPFAS scores were significantly positively correlated with parents’ perceptions of their child’s risk of allergen exposure; parents who reported greater mealtime concerns also perceived a greater risk of allergen exposure (P < .05 for all) (Table 3). A univariate regression analysis was conducted to assess the relative contributions of parenting stress, food allergyerelated quality of life, and perceived risk of allergen exposure on parents’ perceptions of mealtime behavioral concerns. The overall model was significant (F3,67 ¼ 13.50, P < .001). All 3 variables made a significant contribution to mealtime behavioral concerns, with parenting stress having the greatest impact (PIP: b ¼ .33, P < .001; FAQL-PB: b ¼ .26, P < .001; risk of allergen exposure: b ¼ .20, P < .001).
On the BPFAS, parents reported a mean (SD) child mealtime concerns frequency score of 51.61 (12.32) (range, 28e93), a mean
Comparisons With Other Samples
Table 1 Demographic and Food Allergy Characteristics of the 74 Study Participantsa
Parents of children with food allergies reported significantly more mealtime problems than parents of typically developing children.33 Parents of children with food allergy reported more frequent child mealtime concerns than parents of typically developing children (t581 ¼ 3.90, P < .0001) and were more likely to
Results Participant Characteristics Table 1 lists the characteristics of the study participants. Children had a mean (SD) age of 3.57 (1.91) years. Most children were male (62%) and diagnosed with peanut (76%), tree nut (55%), or direct egg (53%) allergies; 69% were diagnosed with more than one food allergy. Parents had a mean (SD) age of 36.32 (4.95) years. Most parents were female (92%) and white (44%) or African American (29%). Approximately half of parents had a graduate or professional degree (54%). In general, our sample reflects the sex breakdown of our clinic population (62% vs 60% male). Our sample represents a slightly more white group of parents than our clinic population, which is 25% white, 41% African American, 5% Asian American, 12% Hispanics, and 17% other race/ethnicity.
Characteristic
Finding
Child age, mean (SD) [range], y Female children Food allergies Peanut Tree nuts Direct egg Baked egg Direct cow’s milk Baked cow’s milk Soy Wheat Fish Shellfish Diagnosed with >1 food allergy Parent age, mean (SD) [range], y Female parents Parent race/ethnicity White African American Asian American Hispanic Other Parent educational level of graduate or professional degree
3.57 (1.91) [0.82e7.93] 28 (38.40)
a
56 (75.70) 41 (55.40) 39 (53.40) 15 (23.10) 21 (28.40) 12 (17.40) 9 (12.20) 8 (10.80) 11 (14.90) 9 (12.30) 51 (68.90) 36.32 (4.95) [23.92e50.93] 68 (91.90) 31 (44.30) 20 (28.60) 8 (11.40) 4 (5.80) 11 (15.70) 39 (54.20)
Data are presented as number (percentage) of participants unless otherwise indicated.
Table 2 Descriptive Statistics Regarding Mealtime Behavior, Parenting Stress, and Food AllergyeRelated Parental Quality of Life Variable
Behavioral Pediatric Feeding Assessment Scale Child frequency Child problem Parent frequency Parent problem Total frequency Total problem Pediatric Inventory for Parents Total frequency Total difficulty Food Allergy Quality of LifeeParental Burden total score Mean perceived risk of allergen exposure Mean perceived food allergy severity Mean food allergy worry
No. of participants
Mean (SD)
Range
74 74 74 74 74 74
51.61 (12.32) 3.57 (4.69) 19.32 (5.28) 1.54 (2.16) 70.93 (16.67) 5.11 (6.51)
28.00e93.00 0.00e18.00 11.00e36.00 0.00e9.00 41.00e127.00 0.00e27.00
71 71 74
78.98 (21.11) 68.18 (22.16) 1.76 (1.18)
46.00e140.00 42.00e144.00 0.00e5.50
74
1.24 (0.49)
0.09e2.60
67 72
52.36 (24.02) 63.35 (24.48)
4.00e100.00 10.00e100.00
4
L.J. Herbert et al. / Ann Allergy Asthma Immunol xxx (2016) 1e6
Table 3 Correlations Among Parents’ Mealtime Concerns and Food Allergy Perceptions BPFAS
Perceived risk of allergen exposure
Perceived food allergy severity
Food allergy worry
PIP- frequency
PIP- difficulty
FAQL-PB
Child frequency Child problem Parent frequency Parent problem Total frequency Total problem
.25a .19 .40b .28a .31b .23a
.20 .13 .13 .15 .19 .14
.03 .13 .15 .18 .07 .15
.48b .44b .53b .48b .53b .47b
.33c .26a .43b .38c .38c .31c
.42b .39c .49b .37c .47b .40b
Abbreviations: BPFAS, Behavioral Pediatric Feeding Assessment Scale; FAQL-PB, Food Allergy Quality of LifeeParental Burden; PIP, Pediatric Inventory for Parents. a P < .05. b P < .001. c P < .01.
report these behaviors as a problem than parents of typically developing children (t581 ¼ 3.36, P < .001). Similarly, parents of children with food allergy reported more frequent parent mealtime concerns than parents of typically developing children (t581 ¼ 3.50, P < .001) and were more likely to report that these concerns were a problem than parents of typically developing children (t581 ¼ 3.83, P < .001) (Table 4). When compared with parents of children with type 1 diabetes, parents of children with food allergy reported more frequent child mealtime concerns (t206 ¼ 3.06, P < .01), but parents’ concerns in other areas were comparable between the 2 samples (P > .05). Finally, when compared with parents of children with diagnosed feeding disorders with or without related medical factors, parents of children with food allergy consistently reported fewer mealtime concerns (P < .001) for all. See Table 4 for additional details. Of note, the food allergy sample was younger than the type 1 diabetes sample (mean, 3.57 vs 5.33 years). Discussion This is the first study to examine the effect of mealtime concerns among a diverse sample of children with food allergy. Parents of children with food allergies reported significantly more mealtime problems than typically developing children. Several factors may explain why mealtime concerns are more common among parents of children with food allergies. Allergic reactions may contribute to child and/or parental fear about trying new foods and anxiety about eating previously introduced foods that are similar to the allergen.34e36 Indeed, food avoidance among children with food allergy has a stronger association with anxiety regarding allergic reactions than medical recommendations regarding elimination diets.37 Very young children who are unable to communicate about their anxiety and physical symptoms may cry, have tantrums, or refuse to eat, so parents may hesitate to feed children certain foods or alter mealtime patterns because they are uncertain if child behavior is due to an allergic reaction or general food pickiness.34 Further complicating feeding is that elimination diets may affect overall growth and nutrition; parents may be concerned about meeting nutritional guidelines; feel pressured to ensure that their child eats an appropriate amount of protein, carbohydrates, and vitamins; and engage in maladaptive mealtime behaviors.34,38e40 Avoiding allergens may also lead to a monotonous diet,41 which may adversely affect mealtime behaviors. Parents of children with food allergies reported significantly fewer mealtime behavioral problems than children with diagnosed feeding concerns. Compared with another pediatric chronic illness that affects diet, type 1 diabetes, parents of children with food allergy reported significantly more frequent child mealtime concerns but similar perceptions regarding whether these child behaviors were a problem and similar perceptions regarding parent mealtime concerns. Although ingestion of an allergen may
result in acutely severe and life-threatening anaphylaxis, mealtime behavioral concerns may be most related to the fact that a strict diet is required of both children with type 1 diabetes and food allergy. Finally, mealtime concerns were strongly related to other parent perceptions of food allergy, such as risk of allergen exposure, food allergyerelated quality of life, and illnessrelated parenting stress. These findings indicate that the parents who are mostly likely to experience mealtime concerns are parents who report general psychosocial functioning concerns as well. This is consistent with findings that increased worry regarding food allergy correlates with decreased quality of life. Strengths, Limitations, and Future Directions This study is the first to assess mealtime behaviors among children with food allergy compared with typically developing children and examine the association of mealtime behaviors with quality of life. Results were based on large sample sizes, and the food allergy sample was racially diverse. Limitations to this study include the cross-sectional design, reliance on internet-based questionnaires, and the restricted age group of the children with food allergies (as necessitated by the validated mealtime behavior measure). It is uncertain whether the findings are generalizable to older age groups, but they are nonetheless important because early childhood is developmentally when parents have primary responsibility for mealtime behaviors. Parents were the sole source of information, and parental perceptions may not necessarily align with those of children. Finally, there were no data on whether children were also diagnosed with eosinophilic esophagitis, a condition that may have a more severe effect on mealtime behaviors than IgE-mediated food allergy. Future research should replicate these findings among a longitudinal sample that has access to in-person or telephone participation and should include more objective measures of feeding concerns (ie, observational studies). Additional details regarding food allergy and general medical history may further elucidate the way that food allergies may affect nutritional concerns and mealtime behavior (ie, epinephrine autoinjector prescription, allergic reaction history, length of food allergy diagnosis, history of feeding difficulties, growth difficulties, and/or appointments with a registered dietician). It will be advantageous to also examine how parents’ mealtime behavioral concerns affect children’s intake (ie, examine food records). Finally, there is little information about older children’s feeding concerns and patterns, so inclusion of older children in future studies is warranted. As the body of literature regarding feeding concerns among children with food allergy increases, it will be possible to develop clinical guidelines regarding the assessment of feeding concerns among patients with food allergy and advocate for appropriate referral to psychologists and registered dieticians who may be able to provide intervention.
1.38 1.97 (2.14) 6.66 226
References
4.0 (2.8)
18.78 (4.92)
a
9.39 226
206 6.62 136 4.4 (2.9) 3.83 P .001. P < .01. b
0.70 (1.7) 1.54 (2.16)
581 a
0.74
Parents of young children with food allergy report more behavioral mealtime concerns than parents of typically developing children and comparable concerns with parents of children with other pediatric illnesses, such as type 1 diabetes. Mealtime concerns were related to parents’ other perceptions about the child’s food allergy and may be an appropriate area for intervention. Future research should investigate feeding concerns over time and how food allergies and maladaptive mealtime behaviors affect nutrition. These data may help clinicians better serve patients with food allergy by identifying which families may need psychosocial or nutritional support in addition to medical guidance. In particular, parents would likely benefit from additional assistance in choosing nutritionally appropriate hypoallergenic formulas, vitamin and mineral supplements, and other food alternatives to ensure children on avoidance diets receive a balanced, healthy diet.
a
27.5 (8.7)
a
16.9 (5.6) 19.32 (5.28)
581
3.50
b
136
6.78
a
26.9 (5.9)
a
206
0.80 4.11 (4.66) 7.21a 11.7 (5.6) 2.0 (3.6) 3.57 (4.69)
581
3.36b
136
9.28a
9.0 (5.6)
226
206
3.06b 46.84 (9.8) 9.40a 72.4 (15.5) 45.6 (12.4)
Child mealtime concerns efrequency Child mealtime concernseproblem Parent mealtime concerns efrequency Parents mealtime concerns eproblem
51.61 (12.32)
581
3.90a
136
8.77a
67.8 (12.1)
226
206
t Score df Mean (SD) t Score df
Medical conditions requiring devices (n ¼ 154)
Mean (SD) t Score df Mean (SD)
Other feeding disorders (n ¼ 64)
5
Conclusions
t Score Mean (SD)
df
Healthy norms (n ¼ 509)
Mean (SD)
Food allergy (n ¼ 74) BPFAS
Table 4 BPFAS Comparisons Among Parents of Children With Food Allergy, Type 1 Diabetes, Feeding Disorders, Medical Conditions Requiring Feeding Devices, and Healthy Children
Type 1 diabetes (n ¼ 134)
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