Centre for Applied Psychology, School of Psychology & Institute for Mental Health, University of Birmingham, 52 Pritchatts Road, Edgbaston, Birmingham, B15 2SA, UK.
Department of Experimental Psychology, University of Oxford, Oxford, UK.
BMC Psychiatry. 2021 Dec 11;21(1):621. doi: 10.1186/s12888-021-03519-1.
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.
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.
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.
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.
与期望变化相关的情绪和行为问题——对变化的抵制——与神经发育障碍有关，包括自闭症谱系障碍（ASD）、普拉德-威利（PWS）和脆性 X 综合征（FXS）。结构化常规是将当前对变化的抵制最小化的最佳实践。但是，完全结构化是不切实际的，而早期生活中的灵活性实际上可以通过支持认知发展来减少以后的抵制。我们旨在研究有发展变化抵制风险的儿童家庭的心理社会背景，以便确定一种干预措施的设计要求，该干预措施在结构和灵活性之间取得有益的平衡。
36 名 4-12 岁儿童的照顾者（17 名 ASD、15 名 PWS 和 4 名 FXS）参与了一项与 12 名专业利益相关者共同设计的访谈。
孩子们需要感到他们可以控制灵活性，但他们也需要在做出选择、理解计划（使用个性化定制的视觉效果）和减轻焦虑方面得到支持。照顾者需要一种他们可以完全控制的易于使用的方法，并且可以根据孩子的情况进行调整。照顾者还需要在结构和灵活性方面获得清晰的指导、教育和支持。
我们提出了一种满足所确定需求的数字方法。它通过在游戏中向儿童呈现灵活性来解决最棘手的挑战，使儿童感到他们可以完全控制，而照顾者在现实中可以保持控制。此外，还可以为儿童和照顾者提供个性化的支持。
