This project addresses a key NIH mission to ameliorate intellectual and developmental disabilities (IDD) by developing and applying smart technologies for the treatment of children with Autism Spectrum Disorder (ASD). Care for ASD will cost U.S. citizens $461 billion annually by 2025, exceeding yearly care costs for diabetes, ADHD, and stroke. Increasing availability to high-quality Applied Behavior Analysis (ABA), the most effective and scientifically-validated approach to remediate impairments associated with ASD, could reduce these costs. Best practices call for at least 25 hours per week of high-quality ABA, however, most children receive less than 10 hours per week due to provider shortage and costs. This project leverages smart technology (GAINS) to empower caregivers of children with ASD to become active, collaborative partners with behavior practitioners in their children's ABA therapy, bridging gaps left by insufficient access to therapy and limited availability of behavior practitioners, which especially affects marginalized communities. GAINS is a smart technology platform that uniquely incorporates knowledge of ABA theory and practice personalized for the individual with developmental challenges. In a similar way to navigation systems for drivers, GAINS is a unique navigation system for instructors and caregivers implementing ABA therapy programs that help learners acquire skills and improve prosocial behaviors. Innovations to GAINS will further enhance collaborative partnerships by empowering caregivers to be more effective eyes and ears of behavior practitioners and providing caregiver-appropriate reporting so caregivers can more easily understand the progress and needs of their children to achieve a mutual understanding with behavior practitioners. Clinical evaluation of the efficacy of smart technology to empower caregivers to teach their children with ASD and related disorders life skills will be evaluated: 1) Does GAINS improve child independent life skill performance when used by a caregiver? 2) Is GAINS guidance sufficient for caregivers to teach life skills to children? 3) Is GAINS useful and usable for teaching life skills? Research design. Single Case Research Designs (SCRDs) using changing criterion (CC). This allows rigorous experimental evaluation of intervention effects and provides a strong basis for establishing causal inferences. Power analysis using pilot data requires a minimum of 8 dyads, but 12 will be recruited. Participants: Dyads (child with ASD and a caregiver) recruited from clinical sites in three U.S. states (2 of 3 rural, underserved populations). Setting: family homes. Independent Variable: GAINS expert guiding technology to support teaching life skills using task analysis, chaining, and prompting. Primary Outcome: child independent life skill performance percentage (at least 8 of 12 children reach at least 90% independent performance with GAINS). Secondary Outcomes: Procedural fidelity; perceived usability and usefulness of the technology; social validity survey related to the goals, procedures, and caregiver effort/child results; and caregiver frequency and duration of GAINS use.
Public Health Relevance Statement: This project leverages smart technology to empower caregivers of children with ASD to become active, collaborative partners with behavior practitioners in their children's ABA therapy, bridging gaps left by insufficient access to therapy and limited availability of behavior practitioners, which especially affects marginalized communities. Clinical evaluation of the efficacy of smart technology to empower caregivers to teach their children with ASD and related disorders life skills will be conducted in three U.S. states, including two sites with rural, underserved populations. Innovations to smart technology will further enhance collaborative partnerships by empowering caregivers to be more effective eyes and ears of behavior practitioners and providing caregiver-appropriate reporting so caregivers can more easily understand the progress and needs of their children to achieve a mutual understanding with behavior practitioners.
Project Terms: Affect; Behavior; Belief; Child; 0-11 years old; Child Youth; Children (0-21); youngster; Developmental Disabilities; Child Development Disorders; Data Analyses; Data Analysis; data interpretation; Data Collection; Diabetes Mellitus; diabetes; Disease; Disorder; Ear; Expert Systems; Intelligent systems; Eye; Eyeball; Family; Future; Goals; Health; Information Systems; Data Systems; IT Systems; Information Technology Systems; Learning; Learning Disorders; Mission; NIH; National Institutes of Health; United States National Institutes of Health; realtime systems; Real-Time Systems; Research; Study Type; study design; Research Design; Science; statistics; Apoplexy; Brain Vascular Accident; Cerebral Stroke; Cerebrovascular Apoplexy; Cerebrovascular Stroke; brain attack; cerebral vascular accident; cerebrovascular accident; Stroke; Supervision; Survey Instrument; Surveys; Teaching; Educational process of instructing; Technology; Testing; Caregivers; Care Givers; Caring; Practice Guidelines; autistic children; children with ASD; children with autism; children with autism spectrum disorder; base; reinforcer; improved; Procedures; Left; Site; Clinical; Phase; Evaluation; Training; Individual; Progress Reports; Knowledge; Life; programs; Hour; Frequencies; Complex; Intellectual disability; Intellectual limitation; intellectual and developmental disability; Intellectual functioning disability; instructor; Services; empowered; American; experience; Performance; computer science; skills; Participant; treatment program; Reporting; social; theories; Enhancement Technology; Provider; AD/HD; ADHD; Predominantly Hyperactive-Impulsive Type Attention-Deficit Disorder; Predominantly Hyperactive-Impulsive Type Hyperactivity Disorder; attention deficit hyperactive disorder; Attention deficit hyperactivity disorder; Effectiveness; Address; Autism; Autistic Disorder; Early Infantile Autism; Infantile Autism; Kanner's Syndrome; autistic spectrum disorder; autism spectrum disorder; Data; research clinical testing; Clinical Evaluation; Clinical Testing; clinical test; Update; Development; developmental; Behavioral; cost; Underserved Population; under served group; under served people; under served population; underserved group; underserved people; efficacy evaluation; efficacy analysis; efficacy assessment; efficacy examination; evaluate efficacy; examine efficacy; clinical research site; clinical site; Outcome; social communication; Navigation System; innovation; innovate; innovative; Impairment; task analysis; usability; primary outcome; secondary outcome; intervention effect; Secure; power analysis; rural underserved; rural under served; applied behavior analysis; applied behavioral analysis; recruit; care costs; board certified behavior analyst; BCBA; Home; marginalized community; community marginalization
