Quality of life in caregivers of children with food allergies

Caring for a child with a food allergy can be burdensome and negatively affect parental quality of life. The mechanisms for improving quality of life in parents of food-allergic children are not yet understood, but recent studies have suggested that information provision can enhance self-efficacy, and in turn quality of life. The present study developed an online self-help website that aimed to improve quality of life and psychological wellbeing in parents of children with food allergy. The website was developed in consultation with parents and allergy specialists. Parents of children with food allergy (N=205) participated in a randomised controlled trial, comparing the website intervention with a waitlist control. No significant differences were found between the website intervention group and the control group between baseline and post-intervention (4 weeks) on any outcome (quality of life, depression, anxiety or stress) or in any potential mediator (self-efficacy and intolerance of uncertainty). Analysis of adherence data identified low engagement with the website, suggesting that the intervention may not have been best suited to the participating parents. Feedback recommended that the intervention would be better targeted at parents of newly diagnosed children. Study limitations are discussed

Evaluating an online self-help intervention for parents of children with food allergies

Background Parents of children with food allergies (CwFA) experience reduced quality of life (QoL) and may have reduced access to in-person interventions in the COVID-19 pandemic. This trial developed and evaluated an online, self-help, information provision website, aimed at improving QoL in parents of CwFA. Methods In a single-blinded, randomised controlled trial (RCT), participants were randomised to either receive access to the website or a waiting-list control. At baseline, post-intervention (week 4) and follow-up (week 8), measures of parental food allergy-related QoL, depression, anxiety, stress, intolerance of uncertainty (IU) and self-efficacy were obtained. Results A total of 205 participants were randomised; 97% were females, 91% white and 78% educated ≥ degree level, with a mean age of 38.95 years (SD = 6.89). 44.9% (n = 92) were retained at follow-up. The arms did not significantly differ on any outcome at any time point. For a sub-group of participants above the clinical cut-off for depression at baseline, the intervention may have improved QoL. Participants reported the website content as useful and accessible, but accessed it infrequently. In baseline data, IU and self-efficacy were significantly associated with QoL. Conclusion While the COVID-19 pandemic has encouraged greater provision of online interventions, our RCT suggests this particular website is not suitable for this population in general, although future research could examine its efficacy for depressed parents of CwFA, to increase confidence that the sub-group finding was not a Type 1 error. The baseline data suggest IU and self-efficacy remain potential proximal targets for intervention

Interventions for caregivers of children with food allergy: a systematic review

Background: Studies have identified that food allergy (FA) in children is related to poorer caregiver quality of life (QoL). However, it is unclear which interventions are most effective at improving outcomes for caregivers of children with FA. This review aimed to identify and determine the efficacy, acceptability and quality of interventions for caregivers of children with FA. Methods: A systematic search of four databases was conducted to identify studies evaluating any intervention that targeted wellbeing and support in caregivers of children with FA. Studies were not excluded based on design and were rated for quality using the mixed method appraisal tool (MMAT) and the Cochrane risk of bias tool for randomised controlled trials (RCTs). Results: Fifteen studies met inclusion; eight studies used a pre-test post-test design, four used a post-test design, two were RCTs and one a case-control design. Seven studies were educational interventions, five were psychological, and three involved peer/professional support. All interventions had high participant acceptability; some evidence for cognitive behavioural interventions in supporting mothers was observed. Educational interventions tended to be associated with improvements in FA knowledge. With exception of three studies, most studies were assessed as poor or moderate in terms of quality. Conclusion: There is a paucity of high-quality research evaluating interventions to improve outcomes in parents of children with FA. Limited evidence suggest that cognitive behavioural interventions could benefit some mothers, but this has not been tested in other populations. Future research should use methodologically sound designs with validated outcome measures

Parental support for children with allergies (PASCAL study): a randomised controlled trial of the effectiveness of a self-help website for parents of children with food allergy

Background The impact of caring for a child with food allergy (FA) on parental quality of life (QoL) is well documented. Recent studies have provided support for the importance of self-efficacy (SE) in increasing QoL for these parents. Despite evidence that traditional psychological interventions (e.g. Cognitive Behavioural Therapy) can increase SE, there is little research examining the effect of web-based or self-help interventions. This study aimed to examine the acceptability and effectiveness of a self-help website on parental QoL. Method This was a single blinded randomised controlled trial of a self-help website for parents of children with FA recruited via social media. Participants completed outcome measures (Food Allergy Quality of Life-Parental Burden (FAQL-PB), depression, anxiety, stress, intolerance of uncertainty and SE) via an online system before being randomised to the intervention arm (immediate access to the self-help website) or waiting list control. Outcomes were measured at baseline, 1- and 3-months. The data reported here relate to the 1-month post-intervention assessment (clinicaltrial.gov identifier NCT03529747). Results A total of 205 participants (112=intervention, 93=control) completed baseline measures (97% female, mean age 38.95 years (SD=6.89)) of which 102 participants (49.8%) completed 1-month outcomes. There were no significant differences at baseline indicating successful randomisation (all ps<.001). Independent t-tests on pre- and post-intervention change scores showed no significant differences on outcomes at 1-month. Conclusion This study reports the 1-month data of a randomised controlled trial of a self-help website for parents of children with FA. The website addressed important areas identified by a patient and public involvement group of parents with children with FA such as clear definitions, recognitions of symptoms and management including access to plans and a technique for managing anxious thoughts. It may be that balancing the desire for a website which was simple, brief with accessible information rather than a website which was more comprehensive resulted in the lack of significant main effects at 1-month. Analysis of longer term follow-up (3-months) and participant feedback in terms of how often the website was accessed and utility of the information provided will enable a deeper understanding of these results

Psychological factors associated with quality of life and burden in parents of children with food allergy

Background Studies have identified that food allergy (FA) in children is related to poor parental quality of life (QoL) and mental health. Furthermore, there is evidence that QoL may be lower for parents of children with FA than parents of children with other chronic health conditions. However, there is a paucity of evidence exploring psychological factors associated with QoL and burden of parents of children with FA which this study aims to address. Method Baseline data from a randomised controlled trial of an online self-help intervention for parents of children with FA were used for the analysis. Demographics in addition to the dependent variable (Food Allergy Quality of Life-Parental Burden (FAQL-PB)) and independent variables (depression, anxiety, stress, intolerance of uncertainty and self-efficacy) were collected. Results A total of 205 parents completed the baseline questionnaires (97% female, mean age 38.95 years (SD=6.89)). Initial analysis revealed that all independent variables significantly correlated with FAQL-PB (ps<.001). Stepwise multiple regression was used to determine if all proposed psychological factors significantly contributed to FAQL-PB. The results of the regression indicated that two psychological factors contributed to 37.1% variance in FAQL-PB (R2=.37, F(2,202)=61.07, p<.001). It was found that anxiety significantly contributed to FAQL-PB (β=.39, p<.001) as did self-efficacy (β=-.38, p<.001). Depression, stress and intolerance of uncertainty were not found to contribute to variance explained. Conclusion This study identifies that parental generalised anxiety and inadequate feelings of self-efficacy associated with poorer QoL and burden for parents of children with FA. Surprisingly, depression, stress and intolerance of uncertainty were not found to be related to parental QoL and burden indicating that interventions should be targeted at improving anxious and efficacious thoughts and behaviours. This is particularly important given the evidence that parental anxiety related to anaphylaxis can be transferred to the child which may affect the child’s longer-term outcomes if not addressed