Autism Spectrum Disorders
Conditions
Keywords
Autism spectrum disorder, Patient participation, Needs assessment, Child, Adolescent, Parent
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.
Interventions
None listed
Sponsors
Region Örebro County
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
7 Years to 17 Years
Healthy volunteers
No
Inclusion criteria
* autism spectrum disorder
Exclusion criteria
* intellectual disability
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| The child's involvement | 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
| Measure | Time frame | Description |
|---|---|---|
| The Mental Health Continuum - Short Form | 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). |
| The Your child's strengths, abilities and special needs-questionnaire. | 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). |
| The collaboration with the neuropsychiatric team questionnaire | 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. |
| Cantril ladder | 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
| Measure | Time frame | Description |
|---|---|---|
| Individual interviews | 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 |
| Type and number of goals in the childrens' individual habilitation plans | 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. |
Countries
Sweden
Outcome results
None listed