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Enrolling by Invitation

NCT Number: NCT06381856

Improving Participation of Autistic Children and Adolescents in the Habilitation Process

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.

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Key information

Conditions

Autism Spectrum Disorders Autism Spectrum Disorder Behavior Child Development Disorders, Pervasive Health Behavior Mental Disorders Neurodevelopmental Disorders Patient Acceptance of Health Care Patient Participation Treatment Adherence and Compliance

Age range

7 year–17 year

Sex eligibility

All sexes

Study type

Observational

Primary location

University Health Care Research Center

Örebro, Örebro County, 70182, Sweden

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • autism spectrum disorder

Exclusion criteria

  • intellectual disability

Treatment and study plan

Primary outcomes

  1. The child's involvement

    Time frame: 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.

    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".

Secondary outcomes

  1. The Mental Health Continuum - Short Form

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

    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).

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

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

    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).

  3. The collaboration with the neuropsychiatric team questionnaire

    Time frame: After completed needs assessment approximately 3 months after inclusion

    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.

  4. Cantril ladder

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

    Measures quality of life and is assessed on a picture of a ladder numbered from zero to ten.

Other outcomes

  1. Individual interviews

    Time frame: After completed needs assessment, approximately 3 months after inclusion

    individual interviews with children, parents and healthcare professionals regarding how they experience the needs assessment procedure

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

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

    Type of goals described in the plans are categorized and the frequency of goals per category is measured.

Sponsors and collaborators

Lead sponsor

Region Örebro County

Other

Registry information

Acronym: IMPAC

Important dates

Study start
2025
Primary completion
2025
Study completion
2026
First posted
Apr 24, 2024
Registry last updated
Aug 11, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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