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The aim of this study is to evaluate the effectiveness of a psychoeducational program in enhancing autism-related knowledge, sibling relationships, well-being, and resilience among adults with a sibling on the spectrum, 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.
Participation in this program is expected to contribute in the improvement of the quality of life of the participants, their siblings with ASD and those related to them. No risk is identified.
Autism Spectrum Disorder (ASD) is a neurodevelopmental lifelong disorder of which prevalence has been significantly increased through the decades. Notwithstanding the abundant research finding on the ASD people and their parents regarding their mental health, quality of life etc., limited evidence exists regarding the siblings of people with ASD. The aim of this study is to apply a psychoeducational program for ASD in adult siblings of people with ASD as a means of providing disorder - related knowledge and improving their quality of life. The psychoeducational program will provide basic knowledge about ASD, training on behavioral management, acceptance and ongoing support to serve the needs of people with ASD and their caregivers.
This study will be a randomized controlled trial (RCT) with voluntary participation. The psychoeducational program will be implemented in adult siblings of people with ASD, free of charge, it will be conducted online by certified trainers, due to the coronavirus pandemic and its effectiveness will be assessed. The sample will be recruited from the general population of Greece. Four groups, each divided into experimental groups and control groups, will be randomized.
To evaluate the effectiveness of the program, participants will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up).
Participation in this program is expected to contribute in the improvement of the quality of life of the participants, their siblings with ASD and those related to them. 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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Psychoeducational program (group A - Ex. gr) | Experimental | This group of volunteers is going to participate in the online psychoeducational training program for ASD. Number of participants:11. To evaluate the effectiveness of the program, participants will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). |
|
| Psychoeducational program (group A - Co. gr) | No Intervention | Concurrently with the experimental group A, the no-interventional group will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). Number of participants:11. | |
| Psychoeducational program (group Β - Ex. gr) | Experimental | This group of volunteers is going to participate in the online psychoeducational training program for ASD. Number of participants:11. To evaluate the effectiveness of the program, participants will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). |
|
| Psychoeducational program (group B - Co. gr) | No Intervention | Concurrently with the experimental group B, the no-interventional group will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). Number of participants:11. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Psychoeducational program for ASD | Other | 6 psychoeducation trainings for Autism Spectrum Disorder |
|
| Measure | Description | Time Frame |
|---|---|---|
| Psychoeducation effectiveness on the knowledge of ASD | 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 | 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 | 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 | 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 |
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Inclusion criteria were: (i) age 18 or older, (ii) having one sibling diagnosed with ASD, (iii) being neurotypical, and (iv) no prior participation in a psychoeducational program for autism.
Exclusion criteria were: (i) having more than one sibling diagnosed with ASD, and (ii) residing outside Greece.
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| Name | Affiliation | Role |
|---|---|---|
| CHARALAMPOS DEPASTAS, PhD stud. | Hellenic Mediterranean University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Hellenic Mediterranean University | Heraklion | Crete | 82102 | Greece |
We will keep the anonymity of participants and there is no plan to share their data to other researchers.
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| ID | Term |
|---|---|
| D000067877 | Autism Spectrum Disorder |
| ID | Term |
|---|---|
| D002659 | Child Development Disorders, Pervasive |
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
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Interventional groups and Control groups
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| Psychoeducational program (group C - Ex. gr) | Experimental | This group of volunteers is going to participate in the online psychoeducational training program for ASD. Number of participants:11. To evaluate the effectiveness of the program, participants will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). |
|
| Psychoeducational program (group C - Co. gr) | No Intervention | Concurrently with the experimental group C, the no-interventional group will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). Number of participants:11. |
| Psychoeducational program (group D - Ex. gr) | Experimental | This group of volunteers is going to participate in the online psychoeducational training program for ASD. Number of participants:11. To evaluate the effectiveness of the program, participants will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). |
|
| Psychoeducational program (group D - Co. gr) | No Intervention | Concurrently with the experimental group D, the no-interventional group will be asked to complete the online questionnaires three times (pre-intervention, post-intervention and three-month follow-up). Number of participants:11. |