Parents\u2019 and caregivers\u2019 experiences and behaviours when eating out with children with a food hypersensitivity

Approximately 6 million children in the United States have a diagnosed food allergy, and 32% of caregivers experience significant psychological distress due to the diagnosis. Despite substantial impacts on psychosocial health and quality of life, few interventions aim to help caregivers of newly diagnosed children. There is a clear, unmet need for interventions to address caregiver distress, especially after the initial diagnosis. We developed a mobile psychosocial health intervention, the Food Allergy Symptom Self-Management with Technology (FASST) app. Primary end points were to determine the app's feasibility and caregiver satisfaction. This was a phase II, randomized controlled, implementation study (4-week duration) in caregivers (N = 30) of children ≤ 18 years of age who were newly diagnosed with a food allergy (≤90 days after the diagnosis). Caregivers (n = 20) were randomized to use the FASST app (intervention group) with access to individualized, self-help symptom relief interventions and food allergy support, and educational resources; or to use a limited app with a basic FASST interface and links to a few educational resources (control group [n = 10]). Ten participants (intervention group, n = 5; control group, n = 5) participated in semistructured interviews at week 4. Both groups found the app relatively easy to use. The intervention group scores for safety preparedness during social activities increased by 24%, whereas those in the control group experienced a 1% decline. The intervention group participants increased the use of websites to find food allergy information by 17% at week 4 compared with 4% for the control group. Although the intervention group participants showed greater gains than did those in the control group in their confidence to prepare for and prevent allergic reactions, and greater declines in perceived social limitations, more participants in the control group endorsed confidence in their ability to recognize (11% versus 5%, respectively) and treat (10% versus 6%, respectively) allergic reactions. Analysis of our results suggests that the FASST app may provide a feasible means of delivering psychosocial and educational supports to caregivers of children recently diagnosed with a food allergy.Clinical trial NCT04512924, www.clinicaltrials.gov.

Differences In Food Allergy Quality Of Life Between Caregivers In a Clinic-Based and a Caregiver-Reported Food Allergic Population

Evaluating the Food Allergy Passport: A Novel Food Allergy Clinical Support Tool

Objective To estimate preferences of adolescents and caregivers of children with food allergies (FA) for food allergy for attributes for treatments intended to prevent exposure-induced severe reactions and to examine how these vary by clinical and demographic factors. Methods A discrete choice experiment (DCE) was conducted between May and June 2024 among US-resident individuals, aged 13–17 years or caregivers of a child with FA aged ≤12 years, self-reporting physician-diagnosed FA. The survey comprised treatment-attribute focused DCE choice sets; the Intolerance of Uncertainty-12 Scale (IUS-12); the Food Allergy Independent Measure (FAIM); and clinical/demographic questions. Conditional logistic regression analyses were conducted overall and among subgroups and presented as odds ratios (ORs) with 95% confidence intervals (CIs). Relative importance of attributes was also calculated. Results Participants were adolescents (n = 73, mean age 15.9 years) and caregivers (n = 228, mean age 37.1 years). Overall, treatment attributes associated with statistically significant odds for preferring a treatment included a 95% relative reduction in moderate-to-severe allergic reaction risk versus no reduction (p < 0.001); oral administration over subcutaneous (p < 0.001); administration in a home versus clinical setting (p < 0.05); less frequent versus daily administration (every two weeks: p < 0.001; every four weeks: p < 0.001). Respondents were disinclined to prefer treatment attributes when the risk of gastrointestinal symptoms (p < 0.001) or anaphylaxis (p < 0.001) increased. Efficacy (75% decrease in relative risk of a moderate-to-severe allergic reaction) was the top ranked attribute [OR = 1.61 (1.49, 1.75)]. Conclusion Overall, respondents indicated significant preferences for more efficacious, safer, and convenient (oral, at-home, and less frequent) treatments. Treatment efficacy was the most highly ranked treatment feature.

BackgroundThis qualitative study investigates the experiences of stigma among caregivers of children with autism, from the viewpoint of family empowerment. The goal is to offer insights that can inform the development of personalized and effective family intervention strategies.MethodsWe invited fifteen family caregivers of children with autism to participate in semi-structured interviews. After each interview, the dialogue was transcribed verbatim. Subsequently, we analyzed the data according to the principles of thematic analysis.ResultsThe experiences of caregivers of children with autism can be categorized into four main themes: (1) the challenges faced by family caregivers, (2) the family’s coping mechanisms in response to the child’s autism, (3) the acceptance and personal growth of caregivers of children with autism, and (4) social interactions from the perspective of family empowerment.ConclusionsEmpowering caregivers to support their physical and mental health generates positive energy, while empathetic understanding offers emotional comfort. It is essential to develop individualized rehabilitation plans through collaborative family-based service mechanisms, provide respite services tailored to family needs, and integrate community resources to improve community engagement. Enhancing social support and increasing public awareness will strengthen the rehabilitation service system. Furthermore, by disseminating information through various channels and coordinating efforts across departments to provide comprehensive care throughout the illness, a family-centered collaborative model can be established, ultimately improving the health of both patients and caregivers.Clinical trial numberNot applicable.

MP51-10 UNEXPECTED CHALLENGES FOR CAREGIVERS OF CHILDREN WITH NEUROGENIC BLADDER

Experiences with Efanesoctocog Alfa: Exit Interviews with Caregivers of Previously Treated Patients with Hemophilia A from the XTEND-Kids Phase 3 Clinical Trial

BackgroundThe impact of reduced kidney function in children is substantial. End-stage kidney disease (ESKD), the most severe form of chronic kidney disease (CKD), is a devastating illness associated with substantially increased mortality, impaired growth and psychosocial maladjustment in children. Understanding how to address the complex causes of mortality and morbidity in children with CKD requires explicit information about the risk factors that lead to adverse outcomes. In addition to biological influences, the socioeconomic circumstances of caregivers may play a significant role in the health and well-being of children with CKD.Methods/DesignA prospective cohort study (n = 380 children and n = 380 caregivers) will be conducted to determine the prevalence of economic hardship among caregivers of children with CKD. All participants will be followed biennially over a period of 5 years to determine the association between the changing socioeconomic status of the caregivers and the health and overall well-being of school-aged children with CKD. Face to face, semi-structured interviews with the caregivers (n = 45) will also be conducted to understand their perspectives on the economic, financial and psychosocial impact of CKD and how this affects the health outcomes of their child with CKD. The primary outcomes of the study are the effects of the socioeconomic status of the caregivers and self-reported health status of the children. Secondary outcomes included the prevalence of economic hardship and the distribution of wealth among the caregivers of children with CKD.DiscussionFindings from this study presents not only a snapshot of the current economic and social situation of the caregivers of children and adolescents with CKD but will also provide definitive evidence of determining whether a link between socioeconomic status of caregivers and outcomes of children with CKD exists.

ObjectiveParents of children with immunoglobulin E (IgE)-mediated food allergies (FA) at risk of anaphylaxis may experience an increased psychosocial burden. Thus, integrating psychosocial support for parents into FA management is essential. Previous psychosocial interventions have demonstrated positive effects for caregivers of children with FA. This study aimed to implement a comprehensive online pilot program for caregivers of children aged 2–8 years diagnosed with FA that carries a risk of anaphylaxis. The primary objectives related to the intervention were to assess quantitative changes in FA-specific parental self-efficacy and burden, stress, and well-being; explore qualitatively the parents’ experiences; and evaluate overall impressions.MethodsA mixed-method, single-arm, non-randomized, pre-post measurement design was used in which an online, six-session-long pilot intervention was conducted among mothers of children with FA. Quantitative methods (N = 25) included administration of self-report questionnaires pre- and post-intervention. Semi-structured interviews on individual intervention experiences (N = 11) were qualitatively analyzed by using interpretative phenomenological analysis (IPA).ResultsPaired-samples t-test indicated significant improvements for FA-specific parental self-efficacy and burden, while non-significant changes were observed for stress and well-being. Increases in self-efficacy were greater among parents who had not previously experienced an anaphylactic event. IPA revealed beneficial shifts in acknowledging and sharing burdensome emotions and parental challenges, while perceived limited changes in social environment’s FA management. Professionally facilitated peer support and psychological techniques acquired during the program were identified as major drivers of observed changes.ConclusionsPreliminary improvements in FA-specific parental outcomes and high perceived usefulness were observed; however, a rigorously designed definitive trial is needed to establish the program’s effectiveness.

Treatment of allergic reactions and quality of life among caregivers of food-allergic children

IntroductionTo capitalise on mHealth, we need to understand the use of mobile phones both in daily life and for health care.ObjectiveTo assess the prevalence and factors that influence usage of mobile phones by caregivers of young children.Materials and MethodsA mixed methods approach was used, whereby a survey (N=1854) and semi-structured interviews (N=17) were conducted concurrently. The quantitative and qualitative data obtained were compared and integrated. Participants were caregivers of young children in Zhao County, Hebei Province, China.ResultsFour main themes were found: (i) trends in mobile phone ownership; (ii) usage of mobile phone functions; (iii) factors influencing replying to text messages; and (iv) uses of mobile phones for health care. The majority of 1,854 survey participants (1,620; 87.4%) used mobile phones, but usage was much higher among mothers (1,433; 92.6%) and fathers (41; 100.0%) compared to grandparents (142; 54.6%). Parents were able to send text messages, grandparents often not. Factors influencing the decision to reply to text messages in daily life were checking the mobile phone, trusting the sender, emotion or feeling when receiving a text message, the importance of replying and ease of use of text messages. Of 1,620 survey participants who used a mobile phone, about one in four (432; 26.7%) had used it for health care in the past three months and most (1,110; 93.5%) of 1,187 who had not wished to use their phone to receive health information.ConclusionWe found that usage of mobile phones is high, several factors influencing usage and an interest of caregivers to use phones for health care in Zhao County, rural China, which can be used to inform studies in settings with similar characteristics. Future work needs to assess factors influencing mobile phone usage in-depth to optimize experiences of users for specific mHealth-based interventions.

Human dietitians vs. Artificial intelligence: Which diet design do you prefer for your children?

Maternal healthcare-seeking behaviour affects the health and well-being of under-five children. Drawing from the concepts of the health belief model, this study seeks to understand the determinants of health-seeking behaviours among mothers or caregivers of under-five-year-old children having severe wasting in Tanzania. A qualitative study employing the ethnography method conducted 32 semi-structured and narrative interviews with healthcare workers, community health workers, traditional healers, religious and village leaders, and mothers or caregivers of children who had acute malnutrition. The analysis of transcripts was done by qualitative content analysis. Further, the thematic analysis was carried out by assigning data into relevant codes to generate categories based on study objectives. Severe wasting among under-five-year-old children was not observed as a serious disease by the majority of mothers or caregivers. The study established that the health systems parameters such as the availability of the community health workers or healthcare providers and the availability of medicines and supplies to the health facility impact on mothers’ or caregivers’ healthcare-seeking behaviours. The findings also show that long distances to the health facility, behavioural parameters such as lack of awareness, negative perception of the management of severe wasting at the health facility, superstitious beliefs, women’s workload, household food insecurity, and gender issues have a significant role in seeking healthcare. The results reaffirm how a programme on integrated management of severe wasting in Tanzania should encompass sociocultural factors that negatively influence mothers or caregivers of children with acute malnutrition. The programme should focus on engaging community structures including traditional healers, religious and village leaders to address prevailing local beliefs and sociocultural factors.

Background Food allergy (FA) is associated with considerable anxiety and poorer quality-of-life (QOL) in caregivers. High self-efficacy for managing FA might reduce this impact but these relationships have not been examined with FA-specific measures.

Coronavirus disease 2019 is a highly contagious virus with the ability to evolve quickly, resulting in different strands of COVID-19 today. COVID-19 has varied effects on different persons. The aim of the study is to assess and compare the knowledge and attitude among the caregivers of children (12-17 years) regarding COVID-19 vaccination for children residing in urban and rural areas of Meghalaya.A comparative descriptive study was performed using semi-structured interview schedule among the caregivers of children (12-17 years) residing in urban and rural areas of Meghalaya regarding COVID-19 vaccine for children. A semi-structured questionnaire, developed by the researcher, was used to assess the knowledge and attitude of the caregivers. A total of 152 data were collected through multistage sampling. Equal numbers of sample were selected from each areas. Analysis shows that the mean knowledge score of urban and rural caregivers are 10.25±1.90 and 9.39±1.62 respectively with the p value of 0.003 and the mean attitude of urban and rural caregivers are 45.33±and 43.24±6.51 respectively with p value of 0.05.An association was found between knowledge of caregivers of children (12-17 years) with educational status and occupation (0.02 and 0.04 respectively). Association was also found between attitude with educational status and occupation of the caregivers of children (12-17 years).The present study shows that urban caregivers have good knowledge and favorable attitude compare to rural caregivers. This highlights the needs for increase sensitization of the community people, especially rural areas regarding COVID-19 vaccine for children.