Quality of life, stress and mental health in parents of children with parentally diagnosed food allergy compared to medically diagnosed and healthy controls

Background. Food allergy is related to poorer quality of life (QoL) and mental health of caregivers. Many parents diagnose food allergy in their child without seeking medical care and there is limited research on this group. This study investigated parental QoL and mental health in parents of children with parent-diagnosed food allergy (PA), medically diagnosed food allergy (MA), and a control group with no allergy (NA). Methods. One hundred and fifty parents from a general population completed validated measures of QoL, anxiety, depression, and stress. Results. Parents of children with food allergy (PA or MA) reported higher stress, anxiety, and depression than the control group (all ). Parents of children with MA reported poorer food allergy related QoL compared to parents of children with PA (); parents of children with PA reported poorer general QoL compared to parents of children with MA (). Conclusion. Parents of children with food allergy have significantly poorer mental health compared to healthy controls, irrespective of whether food allergy is medically diagnosed or not. It is important to encourage parents to have their child medically tested for food allergy and to recognise and refer for psychological support where needed.

Validation of the Paediatric food allergy quality of life questionnaire (PFA-QL)

Objective - The aim of the current study was to validate child (PFA-QL) and parent–proxy (PFA-QL-PF) versions of the scale in a specialist allergy clinic and in parents of children with food allergy. Methods - For the clinic sample, a generic QoL scale (PedsQL) and the PFA-QL were completed by 103 children (age 6–16 yrs) with peanut or tree nut allergy; test–retest reliability of the PFA-QL was tested in 50 stable patients. For the non-clinical sample, 756 parents of food allergic children completed the PFA-QL-PF, the Child Health Questionnaire (CHQ-PF50), Food Allergy Quality of Life Parental Burden Scale (FAQL-PB) and a Food Allergy Impact Measure. Results - The PFA-QL and PFA-QL-PF had good internal consistency (a's of 0.77–0.82), and there was moderate-to-good agreement between the generic- and disease-specific questionnaires. The PFA-QL was stable over time in the clinic sample, and in both samples, girls were reported to have poorer QoL than boys. Conclusions - The PFA-QL and PFA-QL-PF are reliable and valid scales for use in both clinical and non-clinical populations. Unlike other available tools, they were developed and validated in the UK and thus provide a culture-specific choice for research, clinical trials and clinical practice in the UK. Validation in other countries is now needed.

Validation of the food allergy quality of life:parental burden questionnaire in the UK

Purpose - Food allergy can have a profound effect on quality of life (QoL) of the family. The Food Allergy Quality of Life—Parental Burden Questionnaire (FAQL-PB) was developed on a US sample to assess the QoL of parents with food allergic children. The aim of this study was to examine the reliability and validity of the FAQL-PB in a UK sample and to assess the effect of asking about parental burden in the last week compared with parental burden in general, with no time limit for recall given. Methods - A total of 1,200 parents who had at least one child with food allergy were sent the FAQL-PB and the Child Health Questionnaire (CHQ-PF50); of whom only 63 % responded. Results - Factor analysis of the FAQL-PB revealed two factors: limitations on life and emotional distress. The total scale and the two sub-scales had high internal reliability (all a > 0.85). There were small to moderate but significant correlations between total FAQL-PB scores and health and parental impact measures on the CHQ-PF50 (p < 0.01). Significantly greater parental burden was reported for the no-time limited compared with the time-limited version (p < 0.01). Conclusions - The FAQL-PB is a reliable and valid measure for use in the UK. The scale could be used in clinic to assess the physical and emotional quality of life in addition to the impact on total quality of life.

Impact of suspected food allergy on emotional distress and family life of parents prior to allergy diagnosis

Background: Food allergy is associated with psychological distress in both child and parent. It is unknown whether parental distress is present prior to clinical diagnosis or whether experiences at clinic can reduce any distress present. This study aimed to assess anxiety and depression in parents and the impact of suspected food allergy on the lives of families before and after a visit to an allergy clinic. Methods: One hundred and twenty-four parents visiting an allergy clinic for the first time to have their child assessed for food allergy completed a study-specific questionnaire and the Hospital Anxiety and Depression Scale; 50 parents completed these 4-6 wk later in their own home. Results: Most parents (86.4%) reported suspected food allergy had an impact on their family life prior to clinic attendance; 76% had made changes to their child's diet. 32.5% of parents had mild-to-severe anxiety before their clinic visit; 17.5% had mild-to-moderate depression. Post-clinic, 40% had mild-to-severe anxiety; 13.1% had mild-to-moderate depression. There were no significant differences in anxiety (p = 0.34) or depression scores (p = 0.09) before and after the clinic visit. Conclusions: Anxiety and depression is present in a small proportion of parents prior to diagnosis of food allergy in their child and this does not reduce in the short term after the clinic visit. Identification of parents at risk of suffering from distress is needed and ways in which we communicate allergy information before and at clinic should be investigated to see if we can reduce distress. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

The psychosocial impact of an activity holiday for young children with severe food allergy:a longitudinal study

Background Food allergy has been shown to severely affect quality of life (QoL) in children and their families. The Anaphylaxis Campaign UK supports families with allergic children and as part of that support ran an activity holiday for those with food allergy. This study investigated the effectiveness of this activity holiday for reducing anxiety and improving QoL and food allergy management for these children. Methods Measures were taken at baseline, at the start of the activity holiday, at the end of the holiday, at 3 and 6 months follow-up. Children (n = 24) completed a paediatric food allergy–specific QoL questionnaire (PFA-QL), a generic QoL questionnaire (PedsQL™), the Spence Children's Anxiety Scale (SCAS) and the Children's Health Locus of Control (CHLC) scale at all stages of the study. Results There were significant improvements in social QoL, food allergy–specific QoL, total CHLC and internal locus of control scores over time (p > 0.05). There were significant decreases in powerful others locus of control, total anxiety and obsessive compulsive disorder scores (p < 0.05). Greater anxiety significantly correlated with poorer QoL at all time points; no correlations with locus of control were significant at the 3- and 6-month follow-up. Conclusions The activity holiday was of significant benefit to the children who took part, providing support for the need for activity holidays such as this for children with severe food allergy. Ways in which adaptive locus of control and improved quality of life can be facilitated need to be further explored.

Exploring quality of life in families of children living with and without a severe food allergy

This study aimed to explore the impact of food allergy on quality of life in children with food allergy and their primary caregivers, compared to a healthy non-food allergy comparison group. Food allergy children (n = 34) and control children (n = 15), aged 8–12, and their respective primary caregivers (n = 30/n = 13), completed generic quality of life scales (PedsQL™ and WHOQOLBREF) and were asked to take photographs and keep a diary about factors that they believed enhanced and/or limited their quality of life, over a one-week period. Questionnaire analysis showed that parents of children with food allergy had significantly lower quality of life in the social relationships domain and lower overall quality of life than the comparison parents. In contrast, children with food allergy had similar or higher quality of life scores compared to comparison children. Content analysis of photograph and diary data identified ten themes that influenced both child and parental quality of life. It was concluded that although food allergy influenced quality of life for some children, their parent's quality of life was hindered to a greater extent. The variability in findings highlights the importance of assessing quality of life in individual families, considering both children with allergies and their primary caregivers.

The psychosocial impact of food allergy and food hypersensitivity in children, adolescents and their families:a review

Food allergy affects 6% of children but there is no cure, and strict avoidance of index allergens along with immediate access to rescue medication is the current best management. With specialist care, morbidity from food allergy in children is generally low, and mortality is very rare. However, there is strong evidence that food allergy and food hypersensitivity has an impact on psychological distress and on the quality of life (QoL) of children and adolescents, as well as their families. Until recently, the measurement of QoL in allergic children has proved difficult because of the lack of investigative tools available. New instruments for assessing QoL in food allergic children have recently been developed and validated, which should provide further insights into the problems these children encounter and will enable us to measure the effects of interventions in patients. This review examines the published impact of food allergy on affected children, adolescents and their families. It considers influences such as gender, age, disease severity, co-existing allergies and external influences, and examines how these may impact on allergy-related QoL and psychological distress including anxiety and depression. Implications of the impact are considered alongside avenues for future research.

Parental confidence in managing food allergy:development of the Food Allergy Self-Efficacy Scale for parents (FASE-P)

Background: Food allergy is often a life-long condition that requires constant vigilance in order to prevent accidental exposure and avoid potentially life-threatening symptoms. Parents’ confidence in managing their child’s food allergy may relate to the poor quality of life anxiety and worry reported by parents of food allergic children. Objective: The aim of the current study was to develop and validate the first scale to measure parental confidence (self-efficacy) in managing food allergy in their child. Methods: The Food Allergy Self-Efficacy Scale for Parents (FASE-P) was developed through interviews with 53 parents, consultation of the literature and experts in the area. The FASE-P was then completed by 434 parents of food allergic children from a general population sample in addition to the General Self-Efficacy Scale (GSES), the Food Allergy Quality of Life Parental Burden Scale (FAQL-PB), the General Health Questionnaire (GHQ12) and the Food Allergy Impact Measure (FAIM). A total of 250 parents completed the re-test of the FASE-P. Results: Factor and reliability analysis resulted in a 21 item scale with 5 sub-scales. The overall scale and sub-scales has good to excellent internal consistency (α’s of 0.63-0.89) and the scale is stable over time. There were low to moderate significant correlations with the GSES, FAIM and GHQ12 and strong correlations with the FAQL-PB, with better parental confidence relating to better general self-efficacy, better quality of life and better mental health in the parent. Poorer self-efficacy was related to egg and milk allergy; self-efficacy was not related to severity of allergy. Conclusions and clinical relevance: The FASE-P is a reliable and valid scale for use with parents from a general population. Its application within clinical settings could aid provision of advice and improve targeted interventions by identifying areas where parents have less confidence in managing their child’s food allergy.

Cognitive behaviour therapy for mothers of children with food allergy:a case series

Background: Food allergy affects quality of life in patients and parents and mothers report high levels of anxiety and stress. Cognitive Behaviour Therapy (CBT) may be helpful in reducing the psychological impact of food allergy. The aim of this study was to examine the appropriateness and effectiveness of CBT to improve psychological outcomes in parents of children with food allergy. Methods: Five parents (all mothers) from a local allergy clinic requested to have CBT; six mothers acted as controls and completed questionnaires only. CBT was individual and face-to face and lasted 12 weeks. All participants completed measures of anxiety and depression, worry, stress, general mental health, generic and food allergy specific quality of life at baseline and at 12 weeks. Results: Anxiety, depression and worry in the CBT group significantly reduced and overall mental health and QoL significantly improved from baseline to 12 weeks (all p < 0.05) in mothers in the CBT group; control group scores remained stable. Conclusions: CBT appears to be appropriate and effective in mothers of children with food allergy and a larger randomised control trial now needs to be conducted. Ways in which aspects of CBT can be incorporated into allergy clinic visits need investigation.

Parental self-efficacy in managing food allergy and mental health predicts food allergy related quality of life

BACKGROUND: Food allergy has been shown to have a significant impact on quality of life (QoL) and can be difficult to manage in order to avoid potentially life threatening reactions. Parental self-efficacy (confidence) in managing food allergy for their child might explain variations in QoL. This study aimed to examine whether self-efficacy in parents of food allergic children was a good predictor of QoL of the family. METHODS: Parents of children with clinically diagnosed food allergy completed the Food Allergy Self-Efficacy Scale for Parents (FASE-P), the Food Allergy Quality of Life Parental Burden Scale (FAQL-PB), the GHQ-12 (to measure mental health) and the Food Allergy Independent Measure (FAIM), which measures perceived likelihood of a severe allergic reaction. RESULTS: A total of 434 parents took part. Greater parental QoL was significantly related to greater self-efficacy for food allergy management, better mental health, lower perceived likelihood of a severe reaction, older age in parent and child and fewer number of allergies (all p<0.05). Food allergy self-efficacy explained more of the variance in QoL than any other variable and self-efficacy related to management of social activities and precaution and prevention of an allergic reaction appeared to be the most important aspects. CONCLUSIONS: Parental self-efficacy in management of a child's food allergy is important and is associated with better parental QoL. It would be useful to measure self-efficacy at visits to allergy clinic in order to focus support; interventions to improve self-efficacy in parents of food allergic children should be explored. This article is protected by copyright. All rights reserved.

'Their tummys don't really suit that food':children and young teenagers understanding of food allergy

Background: Food allergy (FA) is aunique chronic condition as sufferers aregenerally well unless they accidentally ingest an allergen, whereupon symptoms can be life threatening. A good under-standing of the condition is essential forsuccessful self-management, however little is known about children and young teenagers' understanding. This study aimed toexplore understanding of FA in childrenwith and without FA and whether under-standing changes as children get older.Method: Participants aged 6–14 years (53with FA; 89 without), recruited from loc evidence of a prospective associationbetween maternal, perinatal or infant VDIand subsequent IgE-mediated FA schools and allergy clinics took part insemi-structured interviews; data were analysed using thematic analysis.Results: Three themes were identified fromthe data across the different age groups andallergy statuses: food allergy as a sickness, food allergy as an illness and food allergy asintolerance to food. Children aged 6–8 years described FA as a sickness; you were not allowed the food because it makes youpoorly. Children aged 9–11 years also talked about FA as something that makesyou poorly, but many also described it as anillness and understood that symptoms were caused by food. Children aged 12–14 yearsdescribed it as an intolerance or that FA was your body's response to a particularfood. These age-related differences wereseen in children with and without FA. Conclusion: Although sophistication ofknowledge of FA increases with age, it is still a little understood condition by chil-dren and young teenagers. Clear, age-re-lated information about food allergy andhow it should be managed is needed forthose with and without allergy, to avoidmisunderstanding, and aid awareness andbetter self-management of the condition

Validation of the English version of the Scale for Psychosocial Factors in Food Allergy and the relationship with mental health, quality of life, and self-efficacy

Background. The Scale for Psychosocial Factors in Food Allergy (SPS-FA) is based on the biopsychosocial model of health and was developed and validated in Chile to measure the interaction between psychological variables and allergy symptoms in the child. We sought to validate this scale in an English speaking population and explore its relationship with parental quality of life, self-efficacy, and mental health. Methods. Parents (n = 434) from the general population in the UK, who had a child with a clinical diagnosis of food allergy, completed the SPS-FA and validated scales on food allergy specific parental quality of life (QoL), parental self-efficacy, and general mental health. Findings. The SPS-FA had good internal consistency (alphas = .61-.86). Higher scores on the SPS-FA significantly correlated with poorer parental QoL, self-efficacy, and mental health. All predictors explained 57% of the variance in SPS-FA scores with QoL as the biggest predictor (β = .52). Discussion. The SPS-FA is a valid scale for use in the UK and provides a holistic view of the impact of food allergy on the family. In conjunction with health-related QoL measures, it can be used by health care practitioners to target care for patients and evaluate psychological interventions for improvement of food allergy management.

Situation-specific cognitive behavioural self-therapy for erroneously suspected allergy or intolerance to a food:a short self-assessment tool

The recall of personal experiences relevant to a claim of food allergy or food intolerance is assessed by a psychologically validated tool for evidence that the suspected food could have caused the adverse symptom suffered. The tool looks at recall from memory of a particular episode or episodes when food was followed by symptoms resulting in self-diagnosis of food allergy or intolerance compared to merely theoretical knowledge that such symptoms could arise after eating the food. If there is detailed recall of events that point to the food as a potential cause of the symptom and the symptom is sufficiently serious, the tool user is recommended to seek testing at an allergy clinic or by the appropriate specialist for a non-allergic sensitivity. If what is recalled does not support the logical possibility of a causal connection between eating that food and occurrence of the symptom, then the user of the tool is pointed to other potential sources of the problem. The user is also recommended to investigate remedies other than avoidance of the food that had been blamed.

Management of nut allergy influences quality of life and anxiety in children and their mothers

Nut allergy is known to impact on the quality of life (QoL) and anxiety of both the allergic child and their parents, but little is known about how the management of food allergy is associated with these variables. To investigate the impact of nut allergy on QoL and anxiety in mothers and children with nut allergy in order to identify management strategies that may influence these factors. Forty-one nut allergic children (age 6–16 yrs) and their mothers completed questionnaires to assess maternal and children’s QoL (PedsQL™, WHOQOL-BREF, FAQL-PB), anxiety (SCAS, STAI) and perceived stress scale (PSS). Children also completed a nut allergy specific QoL questionnaire. Demographic data, details of previous reactions, test results and management plans were collected using parent-report questionnaires and hospital notes. Children with nut allergy had poorer emotional (p = 0.004), social (p = 0.043), and psychological (p = 0.006) QoL compared to healthy normative data. Maternal and child QoL and anxiety were not influenced by the severity of previous reactions. Mother and child reported lower anxiety (p = 0.043 and p < 0.001 respectively) when the child was prescribed an epinephrine auto-injector. Anxiety was not associated with whether the child carried the auto-injector or whether they strictly avoided traces of nuts in foods. Prescribing auto-injectors is associated with reduced anxiety for food allergic children and their mothers, but is not associated with improved adherence with medical management or reduced risk-taking behavior.

Adolescent-parent disagreement on health-related quality of life of food-allergic adolescents:who makes the difference?

Background: Food-allergic adolescents are at highest risk for food allergy fatalities, which may be partly due to compromised self-management behavior. Such behavior may be negatively influenced by conflictual situations caused by adolescent–parent disagreement on the adolescent’s health-related quality of life (HRQL). Comparisons of adolescent-self-reported and parent-proxy-reported HRQL of food-allergic adolescents have never extensively been studied. The aims of this study were to investigate disagreement in adolescent-self-reports and parent-proxy-reports on the HRQL of food-allergic adolescents and to investigate the factors influencing adolescent–parent disagreement. Methods: Teenager Form (TF) and Parent Form (PFA) of the Food Allergy Quality of Life Questionnaire (FAQLQ), Food Allergy Independent Measure (FAIM), and Brief-Illness Perception Questionnaire (Brief-IPQ) were sent to food-allergic Dutch adolescents (13–17 years) and their parents. ICCs, t-tests, and Bland–Altman plots were used to investigate adolescent–parent disagreement. Participant characteristics, illness expectations, and illness perceptions influencing adolescent–parent disagreement were studied using regression analysis. Results: Seventy adolescent–parent pairs were included. There were a moderate correlation (ICC = 0.61, P < 0.001) and no significant difference (3.78 vs 3.56, P = 0.103) between adolescent-self-reported and parent-proxy-reported HRQL at group level. However, Bland–Altman plots showed relevant differences (exceeding the minimal important difference) for 63% of all adolescent–parent pairs. Adolescent’s age (>15 years), poorer adolescent-reported illness comprehension (Brief-IPQ-TF, coherence), and higher adolescent-reported perceived disease severity (Food Allergy Independent Measure-Teenager Form & -Parent Form) were associated with adolescent–parent disagreement. Conclusions: Adolescent–parent disagreement on the adolescent’s HRQL was mainly associated with adolescents’ rather than parents’ perceptions and characteristics. Illness comprehension of the adolescent may be an important target for intervention aimed at reducing adolescent–parent disagreement.