ABSTRACT
BACKGROUND: Negative affect is prevalent among adolescents with type 1 diabetes (T1D) and may impact diabetes self-management and outcomes through stress-related behaviors such as disordered eating. METHODS: We describe the development of and design for the adaptation of a mindfulness-based intervention (MBI) for adolescents with T1D and negative affect. BREATHE-T1D is an MBI designed to target negative affect that has been tailored to address the unique lived experiences of adolescents with T1D. Qualitative interviews with stakeholders and participants were used to inform iterative adaptations to the intervention and control curricula over the course of the study. The primary aim of this paper is to describe the design, development, and protocol of the present pilot feasibility trial. CONCLUSIONS: Iterative, qualitative methodology throughout the adaptation of an intervention is important for ensuring the resulting intervention is relevant and meaningful for the target population. CLINICAL TRIAL REGISTRATION NUMBER: NCT05268393.
Subject(s)
Diabetes Mellitus, Type 1 , Mindfulness , Humans , Diabetes Mellitus, Type 1/therapy , Diabetes Mellitus, Type 1/psychology , Mindfulness/methods , Adolescent , Pilot Projects , Female , Feasibility Studies , Male , Qualitative Research , Research Design , Self-Management/methods , Self-Management/psychology , Stress, Psychological/therapy , Stress, Psychological/psychologyABSTRACT
OBJECTIVE: Anxiety is among the major psychological concerns for children living with food allergy (FA). Yet research exploring the variables driving anxiety symptoms in FA remains sparse, and most studies still utilize homogeneous samples to assess anxiety symptoms. The current study seeks to evaluate the rates of clinically significant anxiety symptoms among a diverse sample of youth with FA and examine whether a heightened risk perception of FA outcomes and FA burden (vs. FA medical history) is associated with anxiety in youth. METHODS: 94 youth ages 10-14 and their parents were recruited from FA clinics at a mid-Atlantic children's hospital. Both youth and parents completed demographic and FA medical history questionnaires, the Screen for Child Anxiety Related Emotional Disorders, and the Food Allergy Independent Measure as part of a longitudinal study about FA adjustment and adherence. RESULTS: Over a third (37%) of youth scored above clinical cut-offs for overall anxiety symptoms. At least 25% of youth reported clinically significant scores on panic disorder, generalized anxiety, social anxiety, separation anxiety, and school avoidance subscales. Perception of risk of adverse FA outcomes and burden-but not FA medical history-were associated with total anxiety, generalized anxiety, panic disorder, and school avoidance symptoms, but not social anxiety and separation anxiety. Having more FAs was associated with higher social anxiety scores but not with other anxiety subscales. CONCLUSIONS: Youth with FA might benefit from psychosocial interventions that address FA risk perception management and promote appropriate FA vigilance to cope with anxiety symptoms.
Subject(s)
Anxiety , Food Hypersensitivity , Humans , Female , Adolescent , Male , Food Hypersensitivity/psychology , Child , Anxiety/psychology , Anxiety Disorders/psychology , Surveys and Questionnaires , Longitudinal Studies , Parents/psychologySubject(s)
Behavior Therapy , Food Hypersensitivity , Humans , Adolescent , Feasibility Studies , Food Hypersensitivity/therapySubject(s)
Caregivers , Food Hypersensitivity , Humans , Adolescent , Food Hypersensitivity/epidemiology , Quality of LifeABSTRACT
Objective: Adolescence is a high-risk period for patients with food allergy (FA) as management responsibilities shift to the youth. This study used qualitative methods to explore FA experiences among a diverse pediatric FA population and inform behavioral intervention development. Methods: A total of 26 adolescents ages 9-14 years with IgE-mediated FA (M age = 11.92 years; 62% male; 42% Black, 31% White, 12% Hispanic/Latinx) and 25 primary caregivers (M age = 42.57 years; 32% annual income > $100,000) were recruited from FA clinics to complete separate qualitative interviews about FA-related experiences. Interviews were audio-recorded, transcribed, and entered into Dedoose, a qualitative software program. A grounded theory qualitative analytic approach was used to analyze data. Results: Emergent themes include: 1) FA is a chronic burden that affects daily life, 2) Families experience anxiety about FA, 3) Families find it challenging to transition FA management from parent to child, 4) FA families feel the need to be prepared, 5) FA families frequently advocate for their needs, and 6) Social experiences affect the FA experience. Conclusions: Adolescents with FA and their caregivers experience daily stress related to their chronic illness. A behavioral intervention that provides FA education, bolsters stress/anxiety management, assists parents in transitioning FA management responsibility to the youth, teaches executive functioning and advocacy skills, and fosters peer support could help adolescents successfully cope with and manage FA in their daily lives.
ABSTRACT
The psychosocial burden of food allergy (FA) can significantly affect the lives of pediatric patients and their families. A comprehensive understanding of the state of the literature on psychosocial functioning is imperative to identify gaps that may affect clinical care and future research. This review characterizes the current literature on psychosocial functioning in pediatric patients with FA and their caregivers, siblings, and families. A literature search of 5 databases (PubMed, Ovid MEDLINE, PsycINFO, Web of Science, and Embase) was conducted to identify original research articles and abstracts on psychosocial functioning of patients with FA who were aged 0 to 18 years and their caregivers, siblings, and families. A total of 257 studies met the inclusion criteria. The majority of studies examined child or caregiver psychosocial functioning, with child and caregiver quality of life examined most frequently. Most studies utilized quantitative and cross-sectional methods and inconsistently reported participant race and ethnicity. Existing research on psychosocial functioning in pediatric FA may not be generalizable to patients of color and families and siblings. Future research should diversify recruited samples regarding race, ethnicity, and country of origin; examine psychosocial functioning longitudinally; examine constructs beyond quality of life; and adopt a biopsychosocial approach by considering the interplay among psychosocial functioning, disease burden, and social contexts.
Subject(s)
Food Hypersensitivity , Quality of Life , Child , Humans , Quality of Life/psychology , Psychosocial Functioning , Cross-Sectional Studies , Siblings/psychology , Caregivers/psychologyABSTRACT
OBJECTIVE: Food allergy (FA) management requires youth to avoid allergens and carry emergency medication which can impact participation in social activities. Previous research indicates that some youth experience FA-related bullying, but many studies are limited by single-item assessment methods and a narrow definition of bullying. This study describes FA-related bullying among a diverse cohort of youth with FA and evaluates parent-child disagreement and bullying assessment methods. METHODS: Youth ages 9-15 years (n = 121) diagnosed with an IgE-mediated FA and their primary caregivers were recruited from pediatric FA clinics to complete surveys about their FA-related bullying experiences. Descriptive statistics were conducted to assess overall FA-related bullying and McNemar tests were utilized to assess disagreement among parent-child report and between multi-item and single-item assessment methods. RESULTS: Seventeen percent and 31% of youth reported FA-related bullying on single-item and multi-item assessments, respectively. Twelve percent of parents reported their child had experienced FA-related bullying. Youth reported overt physical (51%), overt non-physical (66%), and relational FA-related bullying (20%). FA-related bullying was most common among classmates. Assessment method significantly affected the rates of FA-related bullying reported by youth, and parents and youth only agreed on FA-bullying experiences when assessed via the single-item measure. CONCLUSIONS: A subset of a diverse sample of youth with FA reported FA-related bullying. Clinicians should use multi-item assessment methods and ask both parents and children about their experiences to fully capture the experiences of families managing FA. School policies that facilitate FA safety and social inclusion should be promoted. CLINICAL TRIAL REGISTRATION: N/A.
Subject(s)
Bullying , Food Hypersensitivity , Adolescent , Child , Humans , Parents , Schools , Surveys and QuestionnairesABSTRACT
BACKGROUND: Severe food allergic reactions can be life-threatening or fatal and are experienced by up to 40% of children with food allergies, with adolescents at greatest risk. There are no comprehensive measures to assess food allergy management behaviors that could prevent allergic reactions. OBJECTIVE: To describe food allergy self-management behaviors as reported by adolescents on a 24-hour recall measure and identify related factors. METHODS: Adolescents aged 10 to 14 years with immunoglobulin E-mediated food allergy completed the Food Allergy Management 24-Hour Recall as an interview. Participants answered questions on each food they ate on the previous day and food allergy self-management behaviors. RESULTS: Participants were a diverse sample (28% White) of 101 adolescents (mean age = 11.80 years; 53% male sex). Most meals and snacks (76%) were observed by adults. Epinephrine autoinjectors (EAIs) were reportedly available for almost all meals and snacks (93%). Almost all foods had been eaten before (95%) and were verified as allergen free (92%). Furthermore, 35% of the time, past experience with the food was the only method used to verify safety. Child age, number of food allergies, or time since allergic reaction was not related to self-management behavior. EAI availability and ingredient verification were most common at home and in school; adult observation was least likely in the home. CONCLUSION: Adolescents reported that EAIs were frequently available, but they relied on past experience with food to determine safety. Appropriate assessment of food safety should be a primary intervention target. The Food Allergy Management 24-Hour Recall may be a useful tool to assess and track food allergy self-management.
Subject(s)
Food Hypersensitivity/prevention & control , Food Hypersensitivity/therapy , Food Preferences , Health Behavior , Self-Management/methods , Adolescent , Child , Decision Making , Epinephrine/therapeutic use , Female , Food Hypersensitivity/immunology , Humans , Immunoglobulin E/immunology , Male , Surveys and QuestionnairesABSTRACT
OBJECTIVE: Parents of young children with newly diagnosed food allergy (FA) are at risk for poor psychosocial outcomes due to FA's life-threatening nature and demanding management routines. Presently, there are no interventions to support FA parents during this adjustment phase. This single-arm pilot study explores the feasibility, acceptability, and preliminary efficacy of a novel intervention using peer mentorship to improve psychosocial functioning in parents of young children with newly diagnosed FA. METHODS: Parent mentors were trained in mentorship and ethics and then matched with a mentee for a 6-month intervention period. Mentees, parents of children (under age 5 years) diagnosed with FA within 1 year, completed baseline and follow-up questionnaires to assess demographic and medical characteristics, FA knowledge, quality of life, self-efficacy, and social support and a program evaluation. Follow-up focus groups with mentors and individual interviews with mentees were conducted. RESULTS: Participants were 8 mentors and 10 mentees (Mage = 36.60 years, 80% Caucasian) of children ages 0-3 years (Mage = 16.15 months; 60% male). Mentees reported high acceptability for the intervention in program evaluation and interviews, noting improvements in their social support, FA-related stress, confidence in FA management, and positive changes in FA parenting behaviors. CONCLUSION: This study supports the use of a peer mentorship program to support parents of children with newly diagnosed FA. Future research is needed to determine how to scale this intervention to meet the needs of a large medical division.
Subject(s)
Food Hypersensitivity , Mentoring , Child , Child, Preschool , Female , Food Hypersensitivity/therapy , Humans , Infant , Infant, Newborn , Male , Mentors , Parents , Pilot Projects , Program Evaluation , Quality of LifeABSTRACT
BACKGROUND: Previous research has indicated that children who stutter are more likely to be bullied and to hold a lower social position than their peers who do not stutter. However, the majority of this research has used data from respondents who were in the educational system more than 20 years ago. The current policy on integration of children with severe disabilities into mainstream education and the increased awareness of bullying in schools would indicate that attitudes toward children who stutter might have changed in the intervening period. METHOD: The study uses a sociometric scale (adapted from Coie, Dodge, & Coppotelli, 1982) to assess children who stutter in classroom groups with fluent peers. The peer relationships between 16 children who stutter and their classmates (403 children in total) were examined. RESULTS: Children who stutter were rejected significantly more often than were their peers and were significantly less likely to be popular. When compared to children who do not stutter, the children who stutter were less likely to be nominated as 'leaders' and were more likely to be nominated to the 'bullied' and 'seeks help' categories. CONCLUSIONS: The changes in integration policy and the implementation of anti-bullying policies in many schools appear to have made little impact on the social status of children who stutter. The incidence of bullying and rejection reported in this study has implications for schools and clinicians.