Objective: Chronic illness in children and adolescents is associated with significant stress and risk of psychosocial problems. In busy pediatric clinics, limited time and resources are significant barriers to providing mental health assessment for every child. A brief, real-time self-report measure of psychosocial problems is needed.
Methods: An electronic distress screening tool, Checking IN, for ages 8-21 was developed in 3 phases. Phase I used semi-structured cognitive interviews (N = 47) to test the wording of items assessing emotional, physical, social, practical, and spiritual concerns of pediatric patients. Findings informed the development of the final measure and an electronic platform (Phase II). Phase III used semi-structured interviews (N = 134) to assess child, caregiver and researcher perception of the feasibility, acceptability, and barriers of administering Checking IN in the outpatient setting at 4 sites.
Results: Most patients and caregivers rated Checking IN as "easy" or "very easy" to complete, "feasible" or "somewhat feasible," and the time to complete the measure as acceptable. Most providers (n = 68) reported Checking IN elicited clinically useful and novel information. Fifty-four percent changed care for their patient based on the results.
Conclusions: Checking IN is a versatile and brief distress screener that is acceptable to youth with chronic illness and feasible to administer. The summary report provides immediate clinically meaningful data. Electronic tools like Checking IN can capture a child's current psychosocial wellbeing in a standardized, consistent, and useful way, while allowing for the automation of triaging referrals and psychosocial documentation during outpatient visits.
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.
Objective: Barriers to medication adherence are common in pediatric epilepsy and associated with nonadherence, suboptimal seizure outcomes, and quality of life. A manualized, family-tailored education and problem-solving adherence intervention to address adherence barriers was tested in a randomized controlled trial in young children (2-12 years) with epilepsy. Study aims were to identify the adherence barriers and solutions chosen by families during intervention.
Methods: Participants with demonstrated non-adherence were randomized to either education attention control or treatment. In this exploratory, secondary analysis, treatment group data were examined, including adherence barriers and solutions discussed during face-to-face problem-solving sessions and telephone follow-ups. Treatment data were independently coded utilizing codebook thematic analysis.
Results: Twenty-seven children were randomized to treatment (M=7.5±2.9; 59.1% female). Across sessions, coding revealed 10 adherence barriers: Overall Forgetting (38-57%), Routine Change Routine (14-24%), Competing Activities (5-19%), Opposition (0-9%), Transition of Responsibility (0-5%), Running Out of Medication (0-10%), Forgetting During Travel (0-10%), Medication Not a Priority (0-5%), Medication Taste (0-5%), and Pill Swallowing (0-5%). Eight solution types were chosen and implemented by families: Environmental Cuing (29-50%), Multi-Pronged solutions (0-24%), Positive Reinforcement (14-23%), Back-up Doses (0-14%), Refill Tracking (0-10%), Caregiver Modeling of Adherence Behavior (0-5%), Pill Swallowing Intervention (0-5%), and Other (0-5%).
Conclusions: Results highlight key adherence barriers identified by families of children with epilepsy and solutions implemented to address them. These data provide guidance to healthcare teams on how to successfully address adherence barriers in clinical settings.Clinical trials #NCT01851057.

