Self-identified Participation and Environment of Children With Disabilities

NCT04522518 | Completed

• 1 other identifier: 201812ES010
• Study Type: observational
• Target: 538
• Locations: 1 country
• Sites: 1

Brief Summary

Picture My Participation (PmP) is a child self-report tool for children and adolescents with disabilities. The PmP uses pictures that enable children to identify participation frequencies, participation goals, and environmental supports/barriers to a home, school, and community activities. The PmP has been translated to different languages and cultures, including Traditional Chinese for the use in Taiwan. Given the advances and popularity of mobile technologies, the PmP-Traditional Chinese version has been developed into App software (PmP-C App) to provide a fun and user-friendly interface to promote communication and active engagement in the assessment process. The PmP-C App version would be need to establish the usability, reliability and validity in children with various types of disabilities. The purposes of this study are to: establish usability, reliability, and validity using the PMP App version, and characterize child-identified participation goals and identify environmental supports and barriers in children with and without disabilities. Data will be collected by examination and interviews using the PmP-C App and other measures for validation.

Conditions

Developmental Disability

Outcome Measures

Primary Outcomes (6)

• Traditional Chinese version of Picture my Participation (PmP-C) frequency scores

  The PmP-C participation frequency is scored on a 4-point scale (1=never to 4=always), a higher score indicating the higher frequency of attending in an activity.

  day 1

• Traditional Chinese version of Picture my Participation (PmP-C) frequency scores

  The PmP-C participation frequency is scored on a 4-point scale (1=never to 4=always), a higher score indicating the higher frequency of attending in an activity.

  1 week since day 1 for test-retest reliability

• Traditional Chinese version of Picture my Participation (PmP-C) involvement scores

  The PmP-C level of involvement is scored on a 3-point scale (1= minimally involved to 3= very involved), a higher score indicating the higher perceived level of involvement when attending an activity.

  day 1

• Traditional Chinese version of Picture my Participation (PmP-C) involvement scores

  The PmP-C level of involvement is scored on a 3-point scale (1= minimally involved to 3= very involved), a higher score indicating the higher perceived level of involvement when attending an activity.

  1 week since day 1 for test-retest reliability

• Traditional Chinese version of Picture my Participation (PmP-C) important activities

  The participants select up to 3 important activities among the PmP-C items, the item numbers will be reported.

  day 1

• Traditional Chinese version of Picture my Participation (PmP-C) important activities

  The participants select up to 3 important activities among the PmP-C items, the item numbers will be reported.

  1 week since day 1 for test-retest reliability

Secondary Outcomes (1)

• Perceived Efficacy and Goal Setting (PEGS) scores

  day 1

Other Outcomes (1)

• Usability questionnaire

  day 1

Study Arms (2)

DD group

160 pairs of children with disabilities 6-12 years of age and their caregivers (n=320)

Device: PmP-C App

TD group

160 pairs of typically developing children 6-12 years of age and their caregivers (n=320)

Device: PmP-C App

Interventions

PmP-C App DEVICE

The key features of PmP-C App include: "About Me" (entering child's demographic data e.g. age, gender, family members), "My participation" (answering frequency and involvement of activities), and "My goal" (selecting 3 important activities they desire to change and identify things that made them easy or hard to do, i.e. participation goals and environmental supports or barriers). The App is to be manipulated adult interviewers but also can be manipulated by the child if they are able to.

DD group; TD group

Eligibility Criteria

• Age: 6 Years - 12 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17)
• Sampling Method: Non-Probability Sample

Study Population

children with disabilities 6-12 years old and their parents or primary caregivers; age-matched children with typical development and their caregivers

You may qualify if:

• children aged 6 to 12 years old
• children with an identified disability or health conditions through early intervention or Disability Evaluation System in Taiwan
• children have a cognitive level of at least 5 years developmental age in receptive language based on the Peabody Picture Vocabulary Test-Revised (PPVT-R) test
• children are able to make choices between 4 options (tested by three trial questions) and are able to express their thoughts verbally, in writing/typing, or with Augmentative and Alternative Communication (AAC)
• both the child and caregiver agree to join this study

You may not qualify if:

• children with unstable health conditions, such as cancer, having surgery within 3 months, infection, or other active medical conditions that affect their recent daily lives
• children with progressive disease (e.g. neuromuscular disease) or degenerative disorders (e.g. degenerative seizures)
• children who are non-communicable, with uncorrected vision or hearing impairments that cannot see the instruments or hear the interview questions
• children and/or caregivers who do not understand Chinese well and thus cannot complete the instruments
• Children with typical development
• children aged 6 to 12 years old
• children without identified disability, physical or mental health conditions related to developmental disabilities
• children are able to make choices between 4 options (tested by three trial questions) and are able to express their thoughts verbally
• both the child and caregiver agree to participate in this study
• children with unstable health or medical conditions (e.g. trauma or infection)
• children and/or caregivers who do not understand Chinese well and thus cannot complete the instruments

Sponsors & Collaborators

• Chang Gung University: lead

Study Sites (1)

Chang Gung University

Taoyuan District, 333, Taiwan

Location

MeSH Terms

Conditions

Developmental Disabilities

Condition Hierarchy (Ancestors)

Neurodevelopmental Disorders; Mental Disorders

Study Officials

• Lin-Ju Kang, PhD

  Chung Gung University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: August 12, 2020
• First Posted: August 21, 2020
• Study Start: August 1, 2019
• Primary Completion: October 30, 2021
• Study Completion: October 30, 2021
• Last Updated: January 19, 2022

Record last verified: 2022-01

Locations

TW (1)