Improving Participation of Autistic Children and Adolescents in the Habilitation Process
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Autism Spectrum Disorders. Basic parameters: 7 years — 17 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Sweden
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
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.
Primary outcome measures
- 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.]
Secondary outcome measures (4)
- The Mental Health Continuum - Short Form [Time frame: 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. [Time frame: At inclusion in the study and after completed needs assessment approximately 3 months after inclusion]
- The collaboration with the neuropsychiatric team questionnaire [Time frame: After completed needs assessment approximately 3 months after inclusion]
- Cantril ladder [Time frame: At inclusion in the study and after completed needs assessment approximately 3 months after inclusion]
Eligibility criteria
Inclusion criteria
- autism spectrum disorder
Exclusion criteria
- intellectual disability
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
Sweden · 1 center
- University Health Care Research Center — Örebro
Publications
- 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
Identifiers
NCT: NCT06381856 · EPM_2024-00227-01