RECRUITING

Empowering Caregivers to Promote Child Independence

Description

The proposed study aims to address the unique needs of caregivers and their adolescent children with profound autism. The constant supervision and 24/7 care that caregivers need to provide their children to ensure their health and safety often leaves little time for household duties, self-care routines, and spending time with family and friends. Investigators aim to alleviate the vigilant monitoring provided by caregivers for brief periods by increasing their child's independent, sustained engagement in meaningful activities and improving the quality of life for both adolescents with profound autism and their caregivers. Caregivers will either receive training to use picture-based activity schedules or continue with their usual routines. After the study, caregivers who continued their usual routines will also be offered the training. Investigators will evaluate the feasibility and acceptability of the training based on the children's performance, pre- and post-study improvement ratings, and caregiver feedback.

Conditions

Study Overview

Study Details

Study overview

The proposed study aims to address the unique needs of caregivers and their adolescent children with profound autism. The constant supervision and 24/7 care that caregivers need to provide their children to ensure their health and safety often leaves little time for household duties, self-care routines, and spending time with family and friends. Investigators aim to alleviate the vigilant monitoring provided by caregivers for brief periods by increasing their child's independent, sustained engagement in meaningful activities and improving the quality of life for both adolescents with profound autism and their caregivers. Caregivers will either receive training to use picture-based activity schedules or continue with their usual routines. After the study, caregivers who continued their usual routines will also be offered the training. Investigators will evaluate the feasibility and acceptability of the training based on the children's performance, pre- and post-study improvement ratings, and caregiver feedback.

Empowering Caregivers to Promote Child Independence and Persistence With Activities

Empowering Caregivers to Promote Child Independence

Condition
Profound Autism
Intervention / Treatment

-

Contacts and Locations

Omaha

Munroe-Meyer Insitute University of Nebraska Medical Center, Omaha, Nebraska, United States, 68106

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Autistic individuals 10 to 17 years of age
  • * Severe or profound intellectual disability diagnosis or reportedly in line with diagnostic criteria based on Autism Diagnostic Observation Schedule, Second Edition ADOS-2
  • * Developmental Profile 4 (DP-4) Cognitive/Communication Domain scores below 70 (Delayed)
  • * Adaptive Behavior Assessment System (ABAS-3) Communication, Health and Safety, and Leisure Domains adaptive skill scores in the Low to Extremely Low range
  • * Can complete between 3-10 simple leisure or daily living skill tasks or activities independently (caregiver may prompt or provide oversight)
  • * Caregivers can remain present to assist with toileting if more than one person is needed to assist
  • * No medication or stable medication regimen with no planned changes for study duration
  • * Stable intervention and/or educational services with no planned changes for study duration
  • * English spoken by at least one caregiver
  • * Known serious medical condition or serious behavioral/psychiatric condition requiring immediate alternative focused intervention

Ages Eligible for Study

10 Years to 17 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

University of Nebraska,

Alice Shillingsburg, PhD, BCBA-D, PRINCIPAL_INVESTIGATOR, University of Nebraska

Study Record Dates

2026-03-31