Clinical trial NCT06381856: Improving Participation of Autistic Children and Adolescents in the Habilitation Process
Official title: Improving Participation of Autistic Children and Adolescents in the Habilitation Process
Study type: OBSERVATIONAL
Overall status: NOT_YET_RECRUITING
Conditions: Autism Spectrum Disorders
Keywords: Autism spectrum disorder
Patient participation
Needs assessment
Child
Adolescent
Parent
Lead sponsor: Region Örebro County
Sponsor class: OTHER
First posted: 2024-04-24
Enrollment: 120
Sex: ALL
Minimum age (years): 7
Maximum age (years): 17
Standard ages: CHILD
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: PROSPECTIVE
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).

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.

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.

Eligibility criteria: Inclusion Criteria:

* autism spectrum disorder

Exclusion Criteria:

* intellectual disability

Primary outcomes:
measure: The child's involvement
timeFrame: 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:
measure: The Mental Health Continuum - Short Form
timeFrame: At inclusion in the study and after completed needs assessment approximately 3 months after inclusion
measure: The "Your child's strengths, abilities and special needs"-questionnaire.
timeFrame: At inclusion in the study and after completed needs assessment approximately 3 months after inclusion
measure: The collaboration with the neuropsychiatric team questionnaire
timeFrame: After completed needs assessment approximately 3 months after inclusion
measure: Cantril ladder
timeFrame: At inclusion in the study and after completed needs assessment approximately 3 months after inclusion
Other outcomes:
measure: Individual interviews
timeFrame: After completed needs assessment, approximately 3 months after inclusion
measure: Type and number of goals in the childrens' individual habilitation plans
timeFrame: After study completion, approximately 1 year after the start of the study.
Locations:
city: Örebro
country: Sweden
facility: University Health Care Research Center
Study officials:
affiliation: Region Örebro County
name: Lars-Olov Lundqvist, Professor
role: PRINCIPAL_INVESTIGATOR
References: