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BMC Psychiatry

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01-12-2021 | Autism Spectrum Disorder | Research article

Understanding the psycho-social context for a new early intervention for resistance to change that aims to strike a beneficial balance between structure and flexibility

Authors: Siobhan Blackwell, Alex Zylberberg, Gaia Scerif, Sarah Miller, Kate A. Woodcock

Published in: BMC Psychiatry | Issue 1/2021

Abstract

Background

Emotional and behavioural problems linked to changes to expectations – resistance to change – are linked to disability in neurodevelopmental disorders, including autism spectrum disorder (ASD), Prader-Willi (PWS) and fragile X syndromes (FXS). Structuring routines is best practice for minimising current resistance to change. But complete structure is impractical and flexibility in early life may actually reduce later resistance by supporting cognitive development. We aimed to examine the psycho-social context of families with children at risk of developing resistance to change so as to identify design requirements for an intervention that strikes a beneficial balance between structure and flexibility.

Methods

Thirty-six caregivers of children aged 4–12 years (17 ASD, 15 PWS, and 4 FXS) took part in an interview designed collaboratively with 12 professional stakeholders.

Results

Children need to feel like they are in control of flexibility but they also need support in choice making, understanding plans (using individually tailored visuals) and anxiety reduction. Caregivers need an accessible approach that they have full control over, and which they can tailor for their child. Caregivers also need clear guidance, education and support around structure and flexibility.

Conclusions

We propose a digital approach which addresses the needs identified. It tackles the most perplexing challenge by presenting flexibility to children in the context of a game that children can feel they have full control over, whilst caregivers can maintain control in reality. Furthermore, individualised support for children and caregivers would be enabled.

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Title: Understanding the psycho-social context for a new early intervention for resistance to change that aims to strike a beneficial balance between structure and flexibility
Authors: Siobhan Blackwell
Alex Zylberberg
Gaia Scerif
Sarah Miller
Kate A. Woodcock
Publication date: 01-12-2021
Publisher: BioMed Central
Keywords: Autism Spectrum Disorder
Anxiety
Published in: BMC Psychiatry / Issue 1/2021
Electronic ISSN: 1471-244X
DOI: https://doi.org/10.1186/s12888-021-03519-1

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Understanding the psycho-social context for a new early intervention for resistance to change that aims to strike a beneficial balance between structure and flexibility

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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