Caregiver Needs and Technology Acceptability for Behavioral-Crisis Support in Children With Neurodevelopmental or Behavioral Conditions

Background: Behavioral crises are common and distressing in children with neurodevelopmental or behavioral conditions, and many escalate to emergency service use. Access to behavioral therapy is often constrained. Smartphone applications, in-home systems, and wearable sensors that could support caregivers during crises at home are in active development, but few studies have asked caregivers what they would accept or want from such tools. Methods: We conducted a single-center cross-sectional online survey (REDCap) of caregivers of children aged 5-17 years with neurodevelopmental or behavioral conditions, recruited as a convenience sample through flyers, email invitations, and in-person invitations during clinic visits from the neurobehavioral continuum of care at Cincinnati Children's Hospital Medical Center. The response rate is undetermined due to the open-ended recruitment process. Prior behavioral-crisis experience was not an eligibility requirement. The 24-item instrument covered crisis burden, service utilization, caregiver confidence and training, therapy access and barriers, and technology preferences. Analyses were estimation-first (proportions with Wilson 95% confidence intervals [CIs]; medians with interquartile ranges [IQRs]); three pre-specified bivariate analyses used ordinal methods (Kendall's tau-b and Jonckheere-Terpstra for ordinal pairs; Friedman for repeated ratings of five support functions). Recruitment is ongoing toward a target of 75; this interim analysis includes the first 55 respondents, and all findings are hypothesis-generating. Results: All 55 respondents reported that their child had experienced a behavioral crisis; 44% (95% CI 31-57%) reported crises at least weekly, and 35% (95% CI 23-48%) had ever used 911 or an emergency department for a crisis. Half of caregivers (51%) felt not at all or only a little confident managing crises, and only 46% (95% CI 33-59%) had received informal or formal crisis-management training. The most frequent barrier to behavioral therapy was long waitlists (51%; 95% CI 38-64%). Stated openness to hypothetical technology-based crisis support was high, with 64% (95% CI 50-75%) very interested in a smartphone app or in-home support system, 80% (95% CI 68-88%) willing to have their child use a wearable sensor (1 of 55 declined), and 49% (95% CI 36-62%) willing to share video or audio with a future support tool (a further 42% answered "maybe"; 9% declined). The most-valued features were a personalized crisis plan (58%) and safe de-escalation scripts (49%); the most-cited concern was privacy and data security (36%). Conclusions: In this small, self-selected, single-center sample, caregivers of children with neurodevelopmental or behavioral conditions reported substantial crisis burden, limited training, and constrained access to therapy, alongside high stated openness to technology-based crisis support; personalization and privacy were their leading priorities. These preliminary, hypothesis-generating findings can inform the design of caregiver-facing crisis-support technologies and larger representative studies.