"Family-centered" Pediatric Rehabilitation Services in Children With Developmental Disabilities

Investigation of "Family-centered" Pediatric Rehabilitation Services Received by Children With Developmental Disabilities

Developmental disability is a severe chronic disabled condition caused by mental or physical impairments. Children with developmental disabilities may face life-long difficulties in motor functioning, self-care, condition, communication, and independent living. They often receive rehabilitation services to promote daily functions and participation in home, school, and community lives.

"Family-centered" service has been considered as "best practice" in pediatric rehabilitation. Therapists encourage children with developmental disabilities and their parents to participate in decision making and implementing process of intervention, and provide intervention plan that best fit their family needs. Research shows that for children with developmental disabilities, family-centered services can enhance children's development, decrease parenting stress, promote emotional wellness, and increase parental satisfaction to services. Though the "family-centered" concept has been considered as relevant in pediatric rehabilitation, there are still difficulties, as well as a lack of evidence regarding its implementation in practice.

Reflecting the trend of family-centered medical care, the benefits of national health insurance in Taiwan for early intervention outpatient care will emphasize on family-centered intervention. The range of benefits may include communication with parents, parental education, consultation and instructions for home programs. Besides, outcomes of family-centered intervention will be treated as an important index for monitoring the quality of medical services.

Given that there is a lack of investigation regarding the family-centered pediatric rehabilitation, the purposes of this one-year research project are to investigate the implementation of family-centered pediatric rehabilitation for children with developmental disabilities and to identify related influencing factors. This study will provide empirical evidence for family-centered services in Taiwan.

Study Overview

• Status: Completed
• Conditions: Developmental Disabilities; Autistic Spectrum Disorder

• Study Type: Observational
• Enrollment (Actual): 130

Contacts and Locations

Study Locations

• Taiwan
  • Taoyuan, Taiwan, 333
    • Chang Gung University

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 2 years to 12 years (Child)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Children with developmental disabilities (DD) aged 2-12 years. Children with DD refer to a diverse group of severe, chronic disability that is attributed to mental and/or physical impairments, resulting in substantial functional limitations in major life activity.

Description

Inclusion Criteria:

1. children aged 2 to 12 years.
2. children with a primary diagnose or condition associated with developmental disabilities, including attention deficit hyperactivity disorder, autism, intellectual disability, Down syndrome, learning disorders, cerebral palsy, and other developmental delay.
3. parents agree to participate in this study.

Exclusion Criteria:

1. children with unstable physical conditions, such as cancer, having surgery within 3 months, infection, or other active medical conditions.
2. children with progressive disease (e.g. neuromuscular disease) or degenerative disorders (e.g. degenerative seizures).

Study Plan

How is the study designed?

Design Details

• Observational Models: Family-Based
• Time Perspectives: Cross-Sectional

Number of groups / cohorts

2

Cohorts and Interventions

Group / Cohort
Parent-child dyad; Children with Developmental Disabilities and their parents
Therapits; Therapists experienced in serving children with developmental disabilities

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Time Frame
The Measure of Processes of Care-20	1 year

Secondary Outcome Measures

Outcome Measure	Time Frame
Measure of Processes of Care- for Service Providers	1 year
Children and Adolescent Factor Inventory	1 year
Assessment of Preschool Children's Participation (APCP)	1 year
Children's Assessment of Participation and Enjoyment (CAPE)	1 year

Collaborators and Investigators

• Sponsor: Chang Gung University
• Investigators: Principal Investigator: Lin-Ju Kang, PhD, Chang Gung University

Study record dates

Study Major Dates

• Study Start: January 1, 2014
• Primary Completion (Actual): December 1, 2014
• Study Completion (Actual): December 1, 2014

Study Registration Dates

• First Submitted: December 22, 2013
• First Submitted That Met QC Criteria: February 6, 2014
• First Posted (Estimate): February 7, 2014

Study Record Updates

• Last Update Posted (Actual): August 17, 2018
• Last Update Submitted That Met QC Criteria: August 15, 2018
• Last Verified: August 1, 2018

More Information

Terms related to this study

• Keywords: Developmental Disabilities; Family-centered services; Pediatric rehabilitation
• Additional Relevant MeSH Terms: Mental Disorders; Neurodevelopmental Disorders; Child Development Disorders, Pervasive; Autism Spectrum Disorder; Developmental Disabilities
• Other Study ID Numbers: 102-3767B