Medical research literature is increasingly reporting high levels of stress among carers of children with Fetal Alcohol Spectrum Disorders (FASD). However, while there are a growing number of evidence-based innovations around the world for carer stress generally, there are no programmes in the UK for those looking after children with FASD. The aim of this study, therefore, is to provide an up-to-date profile of stress faced by these carers, to explore its sources and suggest directions for service development. Seventy-one carers and their child with FASD participated in a study designed for this purpose. Parental stress levels were assessed using the Parental Stress Index (PSI) and the characteristics of their children – cognition, adaptive behaviour, sensory processing and externalising behaviour function – by a battery of measures. Further correlational and regression analyses were carried out to explore the nature and source of the carer stress identified. When the levels of stress in families was measured, all six Child Domains on the PSI showed results that were above the clinically significant cut-off for high stress, while all seven Parent Domains were below this threshold. Significant associations were found between the PSI and child behaviours, but generally the Parent Domain and Child Behaviours were not correlated. Regression analysis found executive functioning difficulties in children to be the main predictors of carer stress but sensory difficulties were not significant, despite 83% of the children having elevated problems of this kind. Total stress scores among carers of children with FASD were elevated and far exceeded the threshold score on the PSI, suggesting a need for ‘further professional consultation’. Consideration of parental needs and the development of evidenced-based interventions specific for these carers are highlighted as areas for future development.

中文翻译：

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胎儿酒精谱系障碍中的照顾者压力：来自英国国家专家 FASD 诊所的数据对培训照顾者的影响

医学研究文献越来越多地报告了胎儿酒精谱系障碍 (FASD) 儿童的照顾者的高度压力。然而，虽然世界各地有越来越多的循证创新措施来解决照料者压力，但英国没有针对那些照顾患有 FASD 儿童的人的计划。因此，本研究的目的是提供这些照顾者面临的压力的最新概况，探索其来源并提出服务发展的方向。71 名照顾者和他们患有 FASD 的孩子参加了为此目的而设计的研究。使用父母压力指数 (PSI) 和他们孩子的特征——认知、适应性行为、感觉处理和外化行为功能——通过一系列措施评估父母的压力水平。进行了进一步的相关性和回归分析，以探索确定的照顾者压力的性质和来源。当测量家庭的压力水平时，PSI 上的所有六个子域的结果都高于高压力的临床显着临界值，而所有七个父域都低于此阈值。在 PSI 和儿童行为之间发现了显着的关联，但通常父域和儿童行为不相关。回归分析发现儿童的执行功能困难是照顾者压力的主要预测因素，但感官困难并不显着，尽管 83% 的儿童有这种问题。FASD 儿童照顾者的总压力评分升高，远远超过 PSI 的阈值，建议需要“进一步的专业咨询”。对父母需求的考虑和针对这些照顾者的循证干预措施的发展被强调为未来发展的领域。