Improving Participation of Autistic Children and Adolescents in the Habilitation Process (IMPAC)

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.

Study Overview

• Status: Enrolling by invitation
• Conditions: Autism Spectrum Disorders

Detailed 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.

• Study Type: Observational
• Enrollment (Estimated): 120

Contacts and Locations

Study Locations

• Sweden
  • Örebro, Sweden, 70182
    • University Health Care Research Center

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child
• Accepts Healthy Volunteers: No

• 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).

Description

Inclusion Criteria:

• autism spectrum disorder

Exclusion Criteria:

• intellectual disability

Study Plan

How is the study designed?

Number of groups / cohorts

2

Cohorts and Interventions

Group / Cohort
survey based needs assessment; cohort receiving survey based needs assessment
Personal meeting based assessment; cohort receiving personal meeting based needs assessment

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
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 Outcome Measures

Outcome Measure	Measure Description	Time Frame
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
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
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
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

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
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
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.

Collaborators and Investigators

• Sponsor: Region Örebro County
• Investigators: Principal Investigator: Lars-Olov Lundqvist, Professor, Region Örebro county

Study record dates

Study Major Dates

• Study Start (Actual): January 13, 2025
• Primary Completion (Estimated): December 1, 2025
• Study Completion (Estimated): December 1, 2026

Study Registration Dates

• First Submitted: April 15, 2024
• First Submitted That Met QC Criteria: April 19, 2024
• First Posted (Actual): April 24, 2024

Study Record Updates

• Last Update Posted (Actual): August 11, 2025
• Last Update Submitted That Met QC Criteria: August 5, 2025
• Last Verified: August 1, 2025

More Information

Terms related to this study

• Keywords: Adolescent; Child; Parent; Autism spectrum disorder; Patient participation; Needs assessment
• Additional Relevant MeSH Terms: Mental Disorders; Neurodevelopmental Disorders; Child Development Disorders, Pervasive; Autism Spectrum Disorder
• Other Study ID Numbers: EPM_2024-00227-01

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No