RECRUITING

Empowering Caregivers to Promote Child Independence

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

Empowering Caregivers to Promote Child Independence and Persistence With Activities

Quick Facts

Study Start:2025-08
Study Completion:2026-03-31
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT07059364

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.

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

Contacts and Locations

Study Contact

Alice Shillingsburg, PhD, BCBA-D
CONTACT
402-559-3098
ashillingsburg@unmc.edu
Emily Sullivan, PhD, BCBA-D
CONTACT
402-559-8863
esullivan@unmc.edu

Principal Investigator

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

Study Locations (Sites)

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

Collaborators and Investigators

Sponsor: University of Nebraska

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

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2025-08
Study Completion Date2026-03-31

Study Record Updates

Study Start Date2025-08
Study Completion Date2026-03-31

Terms related to this study

Keywords Provided by Researchers

  • Profound Autism
  • Picture-Based Activity Schedules
  • Caregiver Training

Additional Relevant MeSH Terms

  • Profound Autism