ABSTRACT

Aim:

Patients with food allergy and their families have poor quality of life, anxiety, depression, and stress compared to healthy individuals, and the Caregiver Burden is high in the parents. In our study, it was aimed to evaluate the anxiety disorder that may accompany the mothers of food allergic patients aged 0-2 years, and to examine the Caregiver Burden in the mothers of food allergic patients.

Materials and Methods:

A questionnaire about sociodemographic data, Hospital Anxiety Depression Scale (HADS), Psychological Symptom Checklist (SCL 90-R), and Zarit Caregiver Burden Scale were administered to the mothers of food-allergic children aged 0-2 years and the mothers of healthy children (MHC) as the control group.

Results:

Sixty seven mothers of children with food allergy and 74 MHC were enrolled in the study. Zarit Caregiver Burden Scale was significantly higher in the mothers of children with food allergy than in the MHC (p=0.018). Mothers of food allergic children had a significantly higher overall score on the general SCL 90-R scale (p=0.045). While the hospital anxiety scale score was significantly higher in the mothers of children with a food allergy, there was no difference in the HADS (p=0.045, p=0.825, respectively).

Conclusion:

Evaluation of mothers’ emotional status such as burden, anxiety, and depression and coping with food allergy strategies can be neglected. Therefore, the requirement of psychosocial support for the mothers of children with food allergy, especially in the young age group, should be evaluated and provided when necessary.

INTRODUCTION

The prevalence of food allergy varies between 5% and 10%, and it has increased over the last few decades¹. The main principles of the treatment are the elimination of the culprit food, prevention from accidental ingestions, and treating acute reactions². Studies have reported that patients with food allergies and their families have decreased quality of life, increased psychological disorders such as anxiety, depression, stress, and social isolation compared to healthy people³. Generally, studies have evaluated patients in the older age group, adolescents, and their families. There are a limited number of studies evaluating the mothers of patients with a diagnosis of food allergy aged 0-2 years^4,5.

Nutrition in the first two years is very important for the physical and neurological development of the baby. Elimination of food due to food allergy and restrictions in daily and social activities cause a decrease in the quality of life for both the patient and their family, and especially for caregiving mothers^3,6,7.

When the child and in some cases the nursing mother are recommended an elimination diet, a new era begins. During this period, the mother often seeks an answer to “What should I eat, what should my baby eat?” questions. The idea of ​​living with the food allergy, elimination of the culprit food from diet, reading of the labels and preparation of allergen-free meals, the risk of sudden and life-threatening reactions, and the possibility of persistence can affect this anxiety and stress situation^3,8.

The caregiver burden scale was evaluated in mothers of children with chronic diseases such as cystic fibrosis and cerebral palsy, and the burden was found to be high^9,10. Food allergy, like other chronic diseases, can last for a long time and the development of tolerance may not occur immediately. Close attention is required during the care of the food allergic patient. The only difference from chronic diseases is that the patient’s health condition is generally good in periods when there is no reaction. However, these reactions can be sudden and life-threatening at unexpected times, and the dependence of the baby on the mother who provides primary care may cause a burden especially on the mother.

Although stress and anxiety disorders have been shown in the mothers of children with food allergies in the literature, they were not evaluated with the caregiver burden scale³.

In our study, we aimed to evaluate the anxiety disorder that may accompany the mothers of patients with a diagnosis of food allergy aged 0-2 years. We aimed to evaluate the burden caused by the existing food allergy in the caregiving mother.

GİRİŞ

Besin alerjisi prevalansı %5-10 arasında değişmekle birlikte, yıllar içinde prevalansında artış gözlemlenmektedir¹. Çoğunlukla tek tedavisi sorumlu besinin diyetten çıkarılması ve gelişen reaksiyonlara müdahale edilmesidir². Yapılan çalışmalarda besin alerjisi olan hasta ve ailelerinde sağlıklı kişilere göre hayat kalitesinde azalma, anksiyete, depresyon, stres ve sosyal izolasyon gibi psikolojik rahatsızlıklarda artış bildirilmiştir³. Yapılan çalışmalarda genellikle büyük yaş grubundaki hastalar, adölesanlar ve aileleri değerlendirilmiş olup 0-2 yaş besin alerjisi tanılı hastaların annelerinin değerlendirildiği çalışmalar kısıtlı sayıdadır^4,5.

İlk iki yaşta bebek beslenmesi bebeğin fiziksel, nörolojik gelişimi açısından oldukça önemlidir. Besin alerjisi nedeni ile eliminasyon diyeti ve bunun için yapılması gerekenler, günlük aktivitelerde ve sosyal faaliyetlerde kısıtlanma, değişen beslenme düzeni hem hasta hem de ailesi için hayat kalitesinde azalmaya, özellikle bakım veren annelerde stres ve kaygıya sebep olmaktadır^3,6,7.

Çocuğa ve kimi durumlarda emziren anneye de eliminasyon diyeti önerilmesi ve sonrasında ek gıdaya geçiş ile birlikte, anne için ‘ne yemeliyim, ne yedirmeliyim?’ sorusuna yanıt aradığı bir dönem başlar. Sadece besin seçimi, etiket okuma ve alerjen içermeyen besinin hazırlanması değil, reaksiyonların ani ve hayatı tehdit edebilecek şekilde olabilmesi, yineleme riski ile yaşama fikri, kısıtlanan besin sayısı ve bu alerjinin geçmeme olasılığı bu kaygı ve stres durumunu etkileyebilmektedir^3,8.

Kistik fibrozis, serebral palsi gibi kronik hastalıkları olan çocukların annelerinde bakım veren külfet ölçeği değerlendirilmiş ve külfet yüksek bulunmuştur^9,10. Besin alerjisi de diğer kronik hastalıklar gibi uzun dönem sürebilmekte, hastanın bakımı sırasında yakın ilgi ve dikkat gerekmekte ve tolerans gelişimi hemen gerçekleşmeyebilmektedir. Kronik hastalıklardan tek farkı, reaksiyon olmadığı dönemlerde hastanın sağlık durumunun genellikle iyi olmasıdır. Ancak reaksiyonların beklenmedik zamanlarda, ani ve hayatı tehdit edebilecek şiddette olabilmesi ve 0-2 yaş arası bebeğin birincil bakımını veren anneye olan bağımlılığı anne üzerinde manevi külfete sebep olabilir. Şimdiye kadar literatürde besin alerjisi olan bebeklerin annelerinde stres ve kaygı bozukluğu gösterilse de bakım veren külfet ölçeği ile bir değerlendirme yapılmamıştır³.

Çalışmamızda 0-2 yaş besin alerjisi tanısı ile takip ettiğimiz hastaların annelerinde eşlik edebilecek stres ve kaygı bozukluğunu değerlendirmek ve var olan besin alerjisinin bakım veren annede yarattığı külfet durumunu incelemek amaçlanmıştır.

MATERIALS AND METHODS

Patients and Control Group

The mothers of patients who were diagnosed with food allergy between the ages of 0 and 2 years, admitted to our hospital’s Pediatric Allergy and Immunology outpatient clinics, were included in the study. Mothers of healthy 0-2-year-old children who were admitted to our hospital’s well child outpatient clinic were enrolled as the control group. Mothers of children with other chronic diseases were not enrolled to the study.

Sample Size Calculation

The number of participants participating in the study was calculated in the Minitab program using anxiety scores obtained in a similar study¹¹. When Type I error was taken by 0.05 and the strength of the study was 80%, the number of people to be taken in each group was calculated as at least 70 (if assumed standard deviation=4.15 and differences=1.99).

Diagnosis of Food Allergy

Food allergy was diagnosed as a compatible clinical history with a wheal diameter >3 mm in the skin prick test and/or specific IgE ≥0.35 kU/L, and/or positive oral provocation test for the culprit food^1,2,12.

Exclusion Criteria

Mothers of patients older than 2 years, without a diagnosis of food allergy, and mothers who did not want to participate were excluded. Besides, mothers who declared that they had a psychiatric illness or underlying medical conditions during the evaluation and illiterate mothers were not included in the study.

Socio-Demographic Characteristics

All mothers in the patient and control groups were filled out a questionnaire containing questions regarding their educational status, family structure, number of people living at home, education, occupation, and monthly income. As a pilot study, the questionnaire was administered to ten mothers selected randomly and tested for clarity at the beginning of the study.

Psychosocial Assessment

To evaluate the stress and anxiety disorders of the mothers, all mothers were asked to complete the Psychological Symptom Checklist (SCL 90-R) and the Hospital Anxiety and Depression Scale (HADS). These scales were filled under the supervision of the investigators.

Hospital Anxiety and Depression Scale

The HADS is a self-report test that includes 14 items and is used to evaluate anxiety and depression symptoms. Each item is scored according to the Likert scale, and the total score is between 0 and 21 for both anxiety and depression subscales. The Turkish validity and reliability study was performed for Turkish society, the threshold values were found to be 7 for depression and 10 for anxiety¹³.

Psychological Symptom Checklist

The SCL 90-R psychological symptom screening test is a self-assessment test consisting of 90 items. Each item scored with a Likert-type scale is used to screen the psychological symptoms. The primary symptom dimensions that are assessed are somatization, obsessive-compulsive, interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety, paranoid ideation, psychoticism, and a category of “additional items”, which helps clinicians assess other aspects of the client’s symptoms. It has been translated and validated into Turkish¹⁴.

Zarit Caregiver Burden Scale

The Zarit Caregiver Burden Scale was used to assess the caregiver’s burden. This scale has been translated and validated into Turkish¹⁵. It consists of 22 items rated on a 5-point Likert scale that ranges from 0 (never) to 4 (nearly always) with the sum of scores between 0 and 88. Higher scores indicate a greater burden. 0-20 points indicate low burden. In our study, it was accepted that mothers who scored 20 or less did not have a burden, and those who scored above had a burden¹⁶.

The scoring and evaluation of the scales were made by the pediatric psychiatry clinic of our hospital, and the mothers deemed necessary were referred for additional psychiatric evaluation.

Ethics

This study has been conducted in accordance with the principles of Helsinki Declaration. Written informed consent was taken from all participants. This study was approved by the Ethics Committee of University of Health Sciences Turkey, Okmeydanı Training and Research Hospital (protocol no: 740, date: 24.10.2017).

Statistical Analysis

Statistical Package for the Social Sciences 22.1 was used for data analysis. The distribution of the data was analyzed using the Shapiro-Wilk’s normality test. Since data did not conform to the normal distribution, median (minimum-maximum) and quantitative data were presented as numbers and percentages (%). The Mann-Whitney U test was used for paired groups since the data did not show normal distribution when compared to qualitative data. Quantitative data were compared using the chi-square test. Linear correlations between the Zarit Caregiver Burden Scale and others were analyzed by the Spearman correlation test. Statistical significance was evaluated as p<0.05.

RESULTS

The study included the mothers of 67 patients and the mothers of 74 healthy children as the age and sex-matched control group. The mean age of the mothers was also similar in both groups. The socio-demographic characteristics of the patient and control groups are given in Table 1.

The Zarit Caregiver Burden Scale scores of the mothers of the patients diagnosed with food allergy were significantly higher than those of the mothers of healthy children (p=0.018). The general score of the psychological symptom screening list (SCL 90-R) was found to be significantly higher in the mothers of children with food allergy (p=0.045). When the subtitles of the SCL 90-R scale were evaluated separately, no significant difference was found between the groups. While the HADS was significantly higher in the mothers of children with a food allergy, there was no difference in the hospital depression scale score (p=0.045, p=0.825, respectively). The results of all scales applied in the mothers of food-allergic children (MFAC) and controls are given in Table 2. There was no significant difference in all scores when compared according to the onset of symptoms. There was a statistically significant positive correlation coefficient (r) value between 0.46 and 0.66 with Zarit Caregiver Burden and all other scales (p=0.001).

Zarit Caregiver Burden Scale was found to be positive as having a burden in 42 (62.6%) MFAC and 35 (47.3%) mothers with healthy children (MHC). Among the mothers with positive Zarit Caregiver Burden Scale, the unemployment was higher and the monthly income of the family was significantly lower in MFAC (p=0.040 and p=0.024, respectively). The comparison of the socio-demographic characteristics of MFAC and MHC with positive Zarit Caregiver Burden Scale is given in Table 3.

DISCUSSION

Food allergy is a global health problem that affects many children and their families. In addition to its financial burden, the decrease in quality of life causes a burden to both the patients and family members^17,18. In our study, the burden was found to be higher in the MFAC aged 0-2 years compared to the MHC in the same age group. Besides, the HADS and SCL 90-R general score were found to be significantly higher in these mothers.

Studies have shown that the families of children with food allergies experience social and emotional deterioration and that parents experience fear and anxiety. It was found that mothers also experience more stress and anxiety than fathers¹⁹. It has been shown that some parents also transfer their anxiety to the child and this situation was especially observed in the parents of children with previous anaphylaxis history²⁰.

Many parents report that they hesitate to try new foods for their children and healthy siblings and felt anxious after food allergy was diagnosed^21,22. Mothers stated that they were more anxious especially on the day of the oral food provocation test compared to the other days²³. However, in cases where the diagnosis of food allergy is confirmed, parental anxiety has been shown to decrease as necessary avoidance measures are taken^24,25. Prescription of an adrenaline autoinjector has been shown to reduce anxiety in some mothers of children with food allergy²⁶. However, parental anxiety for whom an avoidance diet was recommended did not affect the increasing compliance with adrenaline auto-injector carrying and treatment²⁷. Also, no anxiety can result in accidental encounters and risky behaviors during follow-up. Fedele et al.²⁸ evaluated food allergy coping behaviors with four different adaptation models. They found that anxiety and psychosocial influence was less in families that gave a balanced response to this process. It was observed that compliance with the treatment was less and psychosocial involvement was higher in anxious high responder families.

Most studies involve older children and adolescents with food allergy. There is a limited number of studies evaluating anxiety in the parents of the food allergic patients aged 0-2 years. Cortes et al.²⁹ evaluated the mothers of the children with an average age of 26 months with the HADS and they found the anxiety scores high in 42.6% of the mothers. In our study, 14.3% of mothers of children with food allergies had higher anxiety scores and 40.6% had higher depression scores.

In the studies, parental anxiety related to food allergy was evaluated with the quality of life questionnaire and psychosocial symptom screening questionnaires. The variability of the results was attributed to the child’s age group, the timeline of the food allergy diagnosis, and the disease course, and it was thought that it should also be evaluated during the follow-up period³.

Parental anxiety was generally evaluated in both mothers and fathers in the studies. Zarit Burden Scale was found to be higher in the mothers of patients with chronic lung disease than in their fathers¹⁰. In our study, only mothers were evaluated because the caregivers in the first two years of age were mainly the mothers of the children.

Approximately 60% of the parents of children with chronic illness reported that they were in good emotional and physical conditions⁹. In the studies evaluating the burden in the families of food-allergic children, Food Allergy Quality of Life -Parental Burden questionnaire was generally used^30,31. This questionnaire has not been translated and validated into Turkish. Therefore, in our study, the presence of burden in mothers was evaluated with the Zarit Caregiver Burden Scale, which was validated for Turkish¹⁵. The Zarit Caregiver Burden Scale was applied to family members caring for children with chronic diseases such as cystic fibrosis and cerebral palsy, and the burden was found to be high in these disease groups^9,10. In our study, burden in the mothers of children with food allergy was found to be significantly higher than in the MHC.

In our study, the rate of unemployment in the mothers of children with food allergy was found to be significantly higher than in the MHC. Also, the rate of unemployment was found to be higher in mothers with a high score of Zarit Caregiver Burden Scale. Therefore, the unemployment was thought to be a factor that would increase the caregiver burden of the mother.

Study Limitations

The course of food allergy, the culprit allergen, the age group, the type of food allergy can affect the anxiety and burden in the family. The limitation of our study is that the mothers were evaluated in terms of anxiety and burden after a cross-sectional diagnosis of food allergy and no comparison was made in terms of these sub-parameters. Its strength is that it is the first study in our country evaluating the burden in the MFAC aged in the first two years.

TARTIŞMA

Besin alerjisi dünyada çok sayıda çocuğu ve ailesini etkileyen küresel bir sağlık sorunudur. Mali yükün yanı sıra hayat kalitesindeki bozulma hem hastaya hem de aile bireylerine külfete neden olmaktadır^17,18. Çalışmamızda 0-2 yaş arası besin alerjisi tanısı ile takip edilen bebeklerin annelerinde, aynı yaş grubundaki sağlıklı bebeklerin annelerine göre külfet daha yüksek bulunmuştur. Yine bu annelerde kaygı ölçeği puanı ve SCL 90-R genel puanı anlamlı olarak daha yüksek saptanmıştır.

Yapılan çalışmalarda besin alerjisi olan çocukların ailelerinin sosyal ve duygusal etkilenme yaşadıkları, ebeveynlerin korku ve kaygı yaşadıkları ortaya konulmuştur. Ayrıca annelerin babalara göre daha fazla stres ve kaygı yaşadıkları saptanmıştır¹⁹. Bazı ebeveynlerin bu durumda kaygısını çocuğa da aktardığı gösterilmiştir, bu durum özellikle anafilaksi öyküsü olan çocukların ailelerinde gözlenmiştir²⁰.

Birçok ebeveyn besin alerjisi tanısı konulduktan sonra çocuklarına ve sağlıklı kardeşlerine yeni gıda denemesi yapmaktan çekindiklerini ve bundan kaygı duyduklarını bildirmektedir^21,22. Anneler özellikle besin yükleme testi yapılacağı gün diğer günlere göre daha çok kaygı duyduklarını ifade etmişlerdir²³. Bununla birlikte besin alerjisi tanısının doğrulandığı durumlarda gerekli kaçınma önlemleri alındığından ebeveyn kaygısının azaldığı gösterilmiştir^24,25. Adrenalin oto-enjektör reçete edilmesinin bazı besin alerjili çocuk ve annelerinde kaygıyı azalttığı gösterilmiştir²⁶. Ancak kaçınma diyeti önerilen kimi ebeveynde kaygı olmasının adrenalin oto-enjektör taşımaya ve tedaviye uyumu artırıcı bir etkisi bulunmamıştır²⁷. Ek olarak hiç kaygı duyulmaması da izlemde kazara karşılaşma ve riskli davranışlar ile sonuçlanabilmektedir. Fedele ve ark.’nın²⁸ besin alerjisi ile baş etme davranışlarını dört farklı uyum sağlama modeli ile değerlendirdikleri çalışmalarında, bu sürece dengeli bir yanıt veren ailelerde kaygının ve psikososyal etkilenmenin daha az olduğu saptanmıştır. Abartılı yanıt veren ailelerde ise yüksek kaygı düzeyinin yanı sıra tedaviye uyumun daha az olduğu ve psikososyal etkilenmenin daha çok olduğu görülmüştür.

Yapılan çoğu çalışma besin alerjisi olan çocuk ve adölesanları kapsamaktadır. İlk iki yaştaki hastaların ailelerinde kaygının değerlendirildiği çalışma kısıtlı sayıdadır. Cortes ve ark.²⁹ yaş ortalaması 26 ay olan çocukların annelerini hastane anksiyete ve depresyon ölçeği ile değerlendirmişler ve annelerin %42,6’sında anksiyete puanını yüksek bulmuşlardır. Bizim çalışma grubumuzda annelerin %14,3’te anksiyete puanı, %40,6’sında da depresyon puanı yüksek bulundu.

Yapılan çalışmalarda besin alerjisine bağlı ebeveyn anksiyetesi hayat kalite anketi ve psikososyal semptom tarama anketleri ile değerlendirilmiştir. Çıkan sonuçların değişken olması, çocuğun yaş grubu, besin alerjisi tanı zamanı ve seyri gibi durumlardaki farklılıklara bağlanmış ve takipte de değerlendirilmesi gerektiği düşünülmüştür³.

Çalışmalarda genellikle ebeveyn anksiyetesi hem anne hem de babada değerlendirilmiştir. Çalışmamızda ise ilk iki yaşta çocuğa bakım verenin genellikle anne olması nedeni ile sadece anneler değerlendirilmiştir.

Kronik hastalığı olan çocukların ebeveynlerinin yaklaşık %60’ı kendilerinin duygusal ve fiziksel olarak iyi koşullara sahip olduklarını bildirmişlerdir⁹. Yapılan çalışmalarda besin alerjisi olan çocukların ailelerinde külfet, genellikle besin alerjisi hayat kalite-külfet anketleri (FAQL-PB) ile değerlendirilmiştir^30,31. Bu anket Türkçe’ye çevrilmemiş ve valide edilmemiştir. Bu nedenle çalışmamızda annelerdeki külfet varlığı validasyon çalışması yapılmış olan Zarit Külfet ölçeği ile değerlendirilmiştir¹⁵. Zarit külfet ölçeği kistik fibrozis, serebral palsi gibi kronik hastalıkları olan çocuklara bakım veren aile bireylerine uygulanmış olup bu hastalık gruplarında külfet fazla bulunmuştur^9,10. Çalışmamızda da besin alerjili bebeklerin annelerinde külfet diğer kronik hastalıklardaki kadar olmasa da sağlıklı bebeklerin annelerine göre anlamlı olarak yüksek saptandı.

Çalışmamızda besin alerjisi olan çocukların annelerinde çalışmama oranı sağlıklı çocuğu olan annelere göre anlamlı olarak daha yüksek bulundu. Ek olarak Zarit külfet ölçeği yüksek olan annelerde de çalışmama oranı daha fazla saptandı. Bu durumun besin alerjisi olan çocukların annelerinin çocuklarının bakımını sağlamak için çalışmaktan vazgeçmelerine ya da yasal olarak kullanabileceği doğum sonrası izni uzatmalarına bağlı olabileceği düşünüldü.

Besin alerjisinin seyri, alerjen olan gıda, yaş grubu, besin alerjisinin tipi ailedeki anksiyete ve külfeti etkileyebilir.

Çalışmamızın Kısıtlılığı

Çalışmamızın kısıtlılığı, kesitsel olarak besin alerjisi tanısı konulduktan sonra annelerin anksiyete ve külfet açısından değerlendirilmiş olması ve bu alt parametreler açısından karşılaştırma yapılmamasıdır. Güçlü yanı ise besin alerjisi olan ilk iki yaştaki çocukların annelerinde külfetin ülkemizde değerlendirildiği ilk çalışma olmasıdır.

CONCLUSION

In conclusion, the management of food allergy usually includes strict avoidance, patient education and provision of emergency medication (adrenaline-autoinjectors). However, in our clinical practice, the evaluation of mothers’ emotional status such as coping with a food allergy, burden, and anxiety-depression can be neglected. For this reason, the psychosocial support needs of mothers of children with a food allergy, especially in the young age group, should be evaluated and obtained when necessary because psychological, emotional, and social well-being of the caregivers increases the quality of care the child receives.