Improving Participation of Autistic Children and Adolescents in the Habilitation Process

NCT06381856 | Enrolling By Invitation

• 1 other identifier: EPM_2024-00227-01
• Study Type: observational
• Target: 120
• Locations: 1 country
• Sites: 1

Brief Summary

This project aims to explore the impact of a survey-based and a meeting-based needs assessment models on 7 to 17 year old autistic children's participation in the needs assessment process at the initial reception when enrolled at a Child and Youth Habilitation Centre.

Conditions

Autism Spectrum Disorders

Keywords

Autism spectrum disorder; Patient participation; Needs assessment; Child; Adolescent; Parent

Outcome Measures

Primary Outcomes (1)

• The child's involvement

  Consist of seven to nine questions relating to the child's involvement and engagement during a needs assessment meeting. The form is available in three versions. One for each child/youth, parent/guardian and staff. Each version comes in two variants. A variant for a regular meeting and a variant for the closing meeting. The questions are rated on 4-point Likert scales from "Not at all" to "Very much".

  After each of four needs assessment meetings that take place over a 2-month period, with the first meeting scheduled to take place one month after inclusion.

Secondary Outcomes (4)

• The Mental Health Continuum - Short Form

  At inclusion in the study and after completed needs assessment approximately 3 months after inclusion

• The "Your child's strengths, abilities and special needs"-questionnaire.

  At inclusion in the study and after completed needs assessment approximately 3 months after inclusion

• The collaboration with the neuropsychiatric team questionnaire

  After completed needs assessment approximately 3 months after inclusion

• Cantril ladder

  At inclusion in the study and after completed needs assessment approximately 3 months after inclusion

Other Outcomes (2)

• Individual interviews

  After completed needs assessment, approximately 3 months after inclusion

• Type and number of goals in the childrens' individual habilitation plans

  After study completion, approximately 1 year after the start of the study.

Study Arms (2)

survey based needs assessment

cohort receiving survey based needs assessment

Personal meeting based assessment

cohort receiving personal meeting based needs assessment

Eligibility Criteria

• Age: 7 Years - 17 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17)
• Sampling Method: Non-Probability Sample

Study Population

Children and adolescents receiving the survey based needs assessment and their parents/guardians (The survey-based needs assessment cohort). Children and adolescents receiving the personal meeting needs assessment and their parents/guardians (The personal-meeting needs assessment cohort).

You may qualify if:

• autism spectrum disorder

You may not qualify if:

• intellectual disability

Sponsors & Collaborators

• Region Örebro County: lead

Study Sites (1)

University Health Care Research Center

Örebro, Örebro County, 70182, Sweden

Location

Related Publications (1)

• Lundqvist LO, Sjodin L, Karvonen E, Arnell S. Evaluating the impact of needs assessment models on autistic children's participation in the habilitation process: protocol for a prospective observational study. BMJ Open. 2024 Nov 1;14(10):e089135. doi: 10.1136/bmjopen-2024-089135.

  PMID: 39486811 DERIVED

MeSH Terms

Conditions

Autism Spectrum Disorder; Patient Participation

Condition Hierarchy (Ancestors)

Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders; Patient Acceptance of Health Care; Treatment Adherence and Compliance; Health Behavior; Behavior

Study Officials

• Lars-Olov Lundqvist, Professor

  Region Örebro County

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 15, 2024
• First Posted: April 24, 2024
• Study Start: January 13, 2025
• Primary Completion: December 1, 2025
• Study Completion (Estimated): December 1, 2026
• Last Updated: August 11, 2025

Record last verified: 2025-08

Data Sharing

• IPD Sharing: Will not share

Locations

SE (1)