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Updated: Jul 15, 2025

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Caregiver education programme on intellectual and developmental disabilities: An acceptability and feasibility study
Meg Stone-Heaberlin1,2, Allison Blackburn1,2, Cheng Qian1
1Division of Behavioral Medicine and Clinical Psychology l Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
Background:
Children and adolescents with intellectual and developmental disabilities (I/DD), including autism spectrum disorder, benefit from a variety of specialized interventions. However, there are barriers that impact families' ability to access such services for their children. While not intended as a replacement for individualized or group-based interventions, educational classes may be an option in providing supplemental resources and support to families of individuals with I/DD. This study was a programme evaluation that examined the feasibility and acceptability of a Caregiver Education Program that was created in an outpatient specialty clinic of an academic medical centre, designed to provide educational information on a variety of topics relevant to children and adolescents with I/DD (e.g., toilet training, understanding behaviour and managing anxiety).
Method:
The review included 1027 participants from 40 classes led by licensed clinicians, trainees, and/or experienced caregivers. Classes occurred approximately one time per month over the course of three-and-a-half years and targeted caregivers of children and adolescents with I/DD and community-based professionals in the field of I/DD. Participants were able to attend one or multiple classes, based on their interest in the given topic. Participants were asked to complete post-training surveys at the end of each session as part of ongoing programme evaluation.
Results:
Participants reported a high level of satisfaction and increased knowledge as a result of participating in classes, and higher knowledge gained and higher satisfaction for in-person classes compared to virtual classes.
Conclusions:
This programme is one model of education delivery with high acceptability and feasibility, designed to support families and increase access to information beyond specialized interventions. Future directions include improving the model of programme data collection, examination of the programme's generalization to practice and to other communities, and an emphasis on culturally responsive curricula.
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