SHARE-ASD: Feasibility RCT of a group intervention for siblings
Research type
Research Study
Full title
Supporting those who Have A Relative Experiencing Autism Spectrum Disorders (SHARE-ASD): Feasibility RCT of an 8-week group intervention for siblings of children who have ASD
IRAS ID
260159
Contact name
Lucy Watson
Contact email
Sponsor organisation
University of Surrey
Duration of Study in the UK
1 years, 10 months, 1 days
Research summary
Research Summary
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social communication and interaction across a variety of contexts, in addition to restricted, repetitive behaviors and/or interests that are present from early childhood.
Living with a child who has ASD can present both benefits and challenges to family members. However, there are rarely funds available to provide support for anyone other than the individual with ASD and their parents/carers. Similarly, there is limited research on how best to support siblings, whether individually or in a group. For example, a recent review of the literature published during the last twenty years (1998-2018) found only one existing intervention for siblings of children with ASD, however the siblings included in this study were siblings of children with a variety of neurodevelopmental disorders, not just ASD.
The recommendation for the involvement of siblings of children who have ASD in research and clinical practice, as well as the development of interventions to support them, is referred to in many previous research studies, yet it appears little has been achieved in this area. Furthermore, it has been suggested that clinical support for siblings should include: the provision of information about ASD, including strategies to manage challenges, space to talk freely about their experiences and the tension between the roles taken on within the family.
On the basis of existing literature, there is a distinct gap focusing on the direct experience of siblings of children who have ASD and the need to develop therapeutic support interventions for this population. As such, the proposed study aims to assess the feasibility of a novel group intervention for siblings of children with ASD, developed in consultation with service users, education professionals and clinicians working in the Service for Complex Autism and Associated Neurodevelopmental Disorders (SCAAND).
Summary of Results
: It is tentatively concluded that receipt of a freely-available booklet, designed specifically for typically developing siblings of children who have an ASD, may have as much benefit as support group attendance, although this would need to be evaluated definitively.
Has the registry been updated to include summary results?: No
If yes - please enter the URL to summary results:
If no – why not?: Student left University without updating registry.
Did you follow your dissemination plan submitted in the IRAS application form (Q A51)?: No
If yes, describe or provide URLs to disseminated materials:
If pending, date when dissemination is expected:
If no, explain why you didn't follow it: The student has left the University and it is not known if they followed the dissemination plan.
Have participants been informed of the results of the study?: No
If yes, describe and/or provide URLs to materials shared and how they were shared:
If pending, date when feedback is expected:
If no, explain why they haven't: The student has left the University and it is not known if they informed participants of the results.
Have you enabled sharing of study data with others?: No
If yes, describe or provide URLs to how it has been shared:
If no, explain why sharing hasn't been enabled: It is not known if the data has been shared.
Have you enabled sharing of tissue samples and associated data with others?: No
If yes, describe or provide a URL:
If no, explain why: no tissue samplesREC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
19/LO/0822
Date of REC Opinion
15 Jul 2019
REC opinion
Further Information Favourable Opinion