Fullerton J M, Totsika V, Hain R, Hastings R P
Child Psychology Services, Denbighshire CAMHS, Betsi Cadwaladr NHS Trust, Bangor, UK.
Centre for Educational Development, Appraisal and Research (CEDAR) and Centre for Education Studies (CES), University of Warwick, Coventry, UK.
Child Care Health Dev. 2017 May;43(3):393-400. doi: 10.1111/cch.12421. Epub 2016 Nov 1.
This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions.
Thirty-nine siblings participated, aged 3-16 years. Parents completed measures of siblings' emotional and behavioural difficulties, quality of life, sibling relationships and impact on families and siblings. Sibling and family adjustment and relationships were compared with population norms, where available, and to a matched comparison group of siblings of children with autistic spectrum disorder (ASD), as a comparable 'high risk' group.
LLC siblings presented significantly higher levels of emotional and behavioural difficulties, and lower quality of life than population norms. Their difficulties were at levels comparable to siblings of children with ASD. A wider impact on the family was confirmed. Family socio-economic position, time since diagnosis, employment and accessing hospice care were factors associated with better psychological adjustment.
Using a systematic classification of LLCs, the study supported earlier findings of increased levels of psychological difficulties in siblings of children with a LLC. The evidence is (i) highlighting the need to provide support to these siblings and their families, and (ii) that intervention approaches could be drawn from the ASD field.
本研究探讨了患有危及生命疾病（LLCs）儿童的兄弟姐妹的心理调适及手足关系，通过对这些疾病进行系统分类来定义LLCs，从而拓展了以往的研究。
39名年龄在3至16岁的兄弟姐妹参与了研究。父母完成了关于兄弟姐妹的情绪和行为问题、生活质量、手足关系以及对家庭和兄弟姐妹影响的测量。将手足及家庭的调适情况和关系与现有的总体标准进行比较，并与一组匹配的自闭症谱系障碍（ASD）儿童的兄弟姐妹对照组进行比较，ASD儿童作为一个类似的“高风险”群体。
与总体标准相比，患有LLCs的儿童的兄弟姐妹出现了显著更高水平的情绪和行为问题，生活质量更低。他们的问题程度与ASD儿童的兄弟姐妹相当。证实了对家庭有更广泛的影响。家庭社会经济地位、确诊后的时间、就业情况以及获得临终关怀服务是与更好的心理调适相关的因素。
通过对LLCs进行系统分类，该研究支持了早期的研究结果，即患有LLCs的儿童的兄弟姐妹心理困难水平有所增加。证据表明：（i）强调需要为这些兄弟姐妹及其家庭提供支持；（ii）干预方法可以借鉴自闭症谱系障碍领域的方法。
