Clinical trial NCT02057809: "Family-centered" Pediatric Rehabilitation Services in Children With Developmental Disabilities
Official title: Investigation of "Family-centered" Pediatric Rehabilitation Services Received by Children With Developmental Disabilities
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Developmental Disabilities
Autistic Spectrum Disorder
Keywords: Developmental Disabilities
Family-centered services
Pediatric rehabilitation
Lead sponsor: Chang Gung University
Sponsor class: OTHER
First posted: 2014-02-07
Enrollment: 130
Sex: ALL
Minimum age (years): 2
Maximum age (years): 12
Standard ages: CHILD
Accepts healthy volunteers: no
Observational model: FAMILY_BASED
Time perspective: CROSS_SECTIONAL
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.

Brief summary: 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.


Eligibility criteria: 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).

Primary outcomes:
measure: The Measure of Processes of Care-20
timeFrame: 1 year
Secondary outcomes:
measure: Measure of Processes of Care- for Service Providers
timeFrame: 1 year
measure: Children and Adolescent Factor Inventory
timeFrame: 1 year
measure: Assessment of Preschool Children's Participation (APCP)
timeFrame: 1 year
measure: Children's Assessment of Participation and Enjoyment (CAPE)
timeFrame: 1 year
Other outcomes:
Locations:
city: Taoyuan
country: Taiwan
facility: Chang Gung University
Study officials:
affiliation: Chang Gung University
name: Lin-Ju Kang, PhD
role: PRINCIPAL_INVESTIGATOR
References: