Improving Participation of Autistic Children and Adolescents in the Habilitation Process

Autism Spectrum Disorders Clinical Trial

— IMPAC  

Official title:

Improving Participation of Autistic Children and Adolescents in the Habilitation Process

Clinical Trial Details — Status: Not yet recruiting

Administrative data

• NCT number: NCT06381856
• Other study ID #: EPM_2024-00227-01
• Status: Not yet recruiting
• Start date: September 2024
• Est. completion date: December 2025

Study information

• Verified date: April 2024
• Source: Region Örebro County
• Contact: Lars-Olov Lundqvist, Professor
• Phone: +46196025819
• Email: lars-olov.lundqvist[@]regionorebrolan.se
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

Description:

The increasing number of children diagnosed with autism spectrum disorder (ASD) presents significant challenges for healthcare providers. Research emphasizes the importance of involving children in their healthcare decisions. However, due to the complex nature of ASD, characterized by differences in communication and social interaction, healthcare professionals struggle to adapt their services for these children. To address this issue, the present study compares two assessment methods for children with ASD: one based on surveys and another based on meetings with healthcare professionals. In addition, supplementary information from the children's parents or guardians and healthcare providers will be gathered . Data collection methods will include questionnaires, interviews, and analysis of individual habilitation plans. The goal is to recruit 120 children aged 7-17 diagnosed with ASD but without intellectual disabilities, with half undergoing the survey-based assessment and the other half undergoing the meeting-based assessment.

Recruitment information / eligibility

• Status: Not yet recruiting
• Enrollment: 120
• Est. completion date: December 2025
• Est. primary completion date: May 2025
• Accepts healthy volunteers: No
• Gender: All
• Age group: 7 Years to 17 Years

Eligibility

Inclusion Criteria:

• autism spectrum disorder

Exclusion Criteria:

• intellectual disability

Related Conditions & MeSH terms

• Autism Spectrum Disorder
• Autism Spectrum Disorders

Locations

Country	Name	City	State
Sweden	University Health Care Research Center	Örebro

Sponsors (1)

Lead Sponsor	Collaborator
Region Örebro County

Country where clinical trial is conducted

Sweden, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Other	Individual interviews	individual interviews with children, parents and healthcare professionals regarding how they experience the needs assessment procedure	After completed needs assessment, approximately 3 months after inclusion
Other	Type and number of goals in the childrens' individual habilitation plans	Type of goals described in the plans are categorized and the frequency of goals per category is measured.	After study completion, approximately 1 year after the start of the study.
Primary	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	The Mental Health Continuum - Short Form	Consists of 14 questions which is assessed on a 6-point Likert scale and measures mental health in three domains (emotional, psychological and social well-being). The form appears in three versions. One where the child/youth assesses his/hers own health, one where the parent/guardian assesses his/hers own health and one where the parent/guardian assesses the child's/youth's health (i.e., proxy assessment).	At inclusion in the study and after completed needs assessment approximately 3 months after inclusion
Secondary	The "Your child's strengths, abilities and special needs"-questionnaire.	Consists of four or five questions from the "Family outcome survey" and adapted to the study's target group. The questions are answered by the parent/guardian and relate to their understanding of the child's strengths, abilities and special needs. The questions are answered on a 5-point scale Likert scales from "Nothing/Not at all" to "All/Always". The form is available in two variants. One for measurement before completed needs assessment (four questions) and one for measurement after completed needs assessment (five questions).	At inclusion in the study and after completed needs assessment approximately 3 months after inclusion
Secondary	The collaboration with the neuropsychiatric team questionnaire	Consists of five questions relating to the family's contact with the neuropsychiatric team team at the Child and Youth Habilitation. The questions are answered with five answer options.	After completed needs assessment approximately 3 months after inclusion
Secondary	Cantril ladder	Measures quality of life and is assessed on a picture of a ladder numbered from zero to ten.	At inclusion in the study and after completed needs assessment approximately 3 months after inclusion