Psychoeducation for Adult Siblings of ASD People (Autism Spectrum Disorder).
The Effect of Psychoeducation on Adult Siblings of People With Autism Spectrum Disorder.
The purpose of this study was to evaluate the effectiveness of a novel psychoeducational program for adult siblings of autistic individuals, aiming to improve autism-related knowledge, well-being, resilience and sibling relationship outcomes, while also highlighting the need for tailored supportive interventions for this population.
The psychoeducational program will be implemented in adult siblings of people with ASD and its effectiveness will be assessed.
We expect that after the intervention, participants in the intervention group will demonstrate improvements in the study outcomes compared with participants in the control group, and that some of these improvements will be maintained at the three-month follow-up. We further expect that the participants' level of caregiving involvement with their autistic sibling will be associated with the effectiveness of the intervention. No risk is identified.
Study Overview
Status
Conditions
Intervention / Treatment
Detailed Description
Autism Spectrum Disorder (ASD) is a neurodevelopmental lifelong disorder of which prevalence has been significantly increased through the decades.
As a result, the rise in autism prevalence has been accompanied by a parallel increase in the number of individuals who have autistic siblings, a group estimated to number in the millions.
Although supportive interventions have demonstrated benefits for family members, existing research has primarily focused on autistic individuals and their parents. Consequently, evidence regarding interventions specifically designed for adult siblings remains limited.
The purpose of this study was to evaluate the effectiveness of a novel psychoeducational program for adult siblings of autistic individuals, aiming to improve autism-related knowledge, well-being, resilience and sibling relationship outcomes, while also highlighting the need for tailored supportive interventions for this population. The psychoeducational program aims to enhance understanding of autism, encourage emotional expression and a sense of belonging, improve family and sibling communication, and provide practical strategies for everyday challenges.
A parallel-group randomized controlled trial with assessments at baseline, post-intervention and three-month follow-up will be conducted among adult siblings of autistic individuals across Greece (voluntary participation). Participants will be randomly allocated (1:1) to the intervention or control group. The intervention comprise six free-of-charge online psychoeducational sessions and one follow-up session and will be delivered by two social workers certified in autism psychoeducation, whereas the control group will complete questionnaires only.
We expect that after the intervention, participants in the intervention group will demonstrate improvements in the study outcomes compared with participants in the control group, and that some of these improvements will be maintained at the three-month follow-up. We further expect that the participants' level of caregiving involvement with their autistic sibling will be associated with the effectiveness of the intervention. No risk is identified.
This study is part of a doctoral thesis in progress at the Hellenic Mediterranean University (HELMEPA), Department of Social Work.
The study is expected to start in April 2024 and to be completed about six months later.
Study Type
Enrollment (Actual)
Phase
- Not Applicable
Contacts and Locations
Study Locations
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Crete
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Heraklion, Crete, Greece, 82102
- Hellenic Mediterranean University
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-
Participation Criteria
Eligibility Criteria
Ages Eligible for Study
- Adult
- Older Adult
Accepts Healthy Volunteers
Description
Inclusion criteria were: (i) age 18 or older, (ii) having one sibling with a clinical diagnosis of ASD, (iii) no self-reported neurodevelopmental diagnosis, (iv) no prior participation in a psychoeducational program for autism and v) able to understand and communicate in Greek.
Exclusion criteria were: (i) having more than one sibling diagnosed with ASD, and (ii) residing outside Greece.
Participants were also required to have access to the internet and a device capable of participating in the online audiovisual sessions.
Study Plan
How is the study designed?
Design Details
- Primary Purpose: Supportive Care
- Allocation: Randomized
- Interventional Model: Parallel Assignment
- Masking: Single
Arms and Interventions
Participant Group / Arm |
Intervention / Treatment |
|---|---|
|
Experimental: Psychoeducation Program Group
Participants are going to participate in the online psychoeducational program for ASD. Number of participants: 44. They will will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and at the three-month follow-up). |
6 psychoeducational sessions and one follow-up session for Autism Spectrum Disorder
|
|
No Intervention: Questionnaires Only Group
Concurrently with the intervention group, the control group will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). Number of participants: 44. |
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
|
Psychoeducation effectiveness on the knowledge of ASD
Time Frame: 6 months
|
The evaluation of psychoeducational program effect on knowledge of ASD is going to be evaluated throw the "Participatory Autism Knowledge Scale" questionnaire (29-item scale) will be used.
The original validation studies demonstrated satisfactory psychometric properties, showing good internal consistency.
The standardization and adaptation of the questionnaire into Greek has not yet been published in a peer-reviewed journal.
|
6 months
|
|
Psychoeducation effectiveness on siblings relationship
Time Frame: 6 months
|
A newly developed research measure, designed specifically for this study to assess negative emotions and attitudes of adult siblings toward their autistic sibling.
The questionnaire's name is "Adult Sibling Relationships and Autism Spectrum Questionnaire (ASRQ-AS) " - 31-item scale.
The standardization and adaptation of the questionnaire into Greek has not yet been published in a peer-reviewed journal.
|
6 months
|
|
Psychoeducation effectiveness on resilience of siblings of ASD
Time Frame: 6 months
|
The Brief Resilience Scale (BRS) was developed to assess an individual's ability to recover from stress and adversity.
It can also be used to examine factors and outcomes associated with resilience in both mental and physical health, identifying individuals who may benefit from supportive or therapeutic interventions.
The internal consistency (Cronbach's α) of the BRS demonstrates good reliability as well as in Greek version.
|
6 months
|
|
Psychoeducation effectiveness on the well-being of siblings of ASD
Time Frame: 6 months
|
The evaluation of psychoeducational program effect on the well-being is going to be evaluated throw the questionnaire "PERMA-Profiler" (23-item scale).
The scale has demonstrated adequate reliability and validity in assessing well-being - Cronbach's α values.
|
6 months
|
Collaborators and Investigators
Investigators
- Principal Investigator: CHARALAMPOS DEPASTAS, PhD stud., Hellenic Mediterranean University
Study record dates
Study Major Dates
Study Start (Actual)
Primary Completion (Actual)
Study Completion (Actual)
Study Registration Dates
First Submitted
First Submitted That Met QC Criteria
First Posted (Actual)
Study Record Updates
Last Update Posted (Actual)
Last Update Submitted That Met QC Criteria
Last Verified
More Information
Terms related to this study
Keywords
Additional Relevant MeSH Terms
Other Study ID Numbers
- 3764/2-10-2019
Plan for Individual participant data (IPD)
Plan to Share Individual Participant Data (IPD)?
IPD Plan Description
Drug and device information, study documents
Studies a U.S. FDA-regulated drug product
Studies a U.S. FDA-regulated device product
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