Havermans Trudy, Croock Ilse De, Vercruysse Trui, Goethals Eveline, Diest Ilse Van
University Hospital Leuven, Belgium.
Catholic University of Leuven, Belgium
J Child Health Care. 2015 Jun;19(2):154-66. doi: 10.1177/1367493513503582. Epub 2013 Oct 23.
To assess Belgian siblings' self-reported quality of life (QoL) and the impact of illness on four different paediatric illnesses. Healthy siblings (n = 131) of children with type 1 diabetes, cancer, congenital heart disease (CHD) and cystic fibrosis (CF) completed the Child Health Questionnaire and the Sibling Perception Questionnaire. Results were compared to those of a matched group of siblings of healthy children. Siblings reported a good QoL, similar to controls, with the exception that siblings reported better on the QoL domain pain (p < .01). QoL was not related to time since diagnosis but the impact of illness was higher nearer to the time of diagnosis (r = -.39, p < .001). QoL of siblings of children with CHD or cancer was lower than QoL in the CF or type 1 diabetes group whilst impact of illness was highest for the CHD group. QoL of siblings of a child with a chronic illness is similar to the QoL of peers. Studies investigating siblings' QoL or the impact of illness on siblings should include the day-to-day demands of the illness as well as less obvious illness-related issues like 'hidden stress' and 'sense of control'.
评估比利时同胞兄弟姐妹自我报告的生活质量（QoL）以及疾病对四种不同儿科疾病的影响。1型糖尿病、癌症、先天性心脏病（CHD）和囊性纤维化（CF）患儿的健康同胞兄弟姐妹（n = 131）完成了儿童健康问卷和同胞认知问卷。将结果与一组匹配的健康儿童的同胞兄弟姐妹的结果进行比较。同胞兄弟姐妹报告的生活质量良好，与对照组相似，但同胞兄弟姐妹在生活质量领域的疼痛方面报告得分更高（p < 0.01）。生活质量与诊断后的时间无关，但疾病的影响在诊断时间越近时越高（r = -0.39，p < 0.001）。患有CHD或癌症儿童的同胞兄弟姐妹的生活质量低于CF或1型糖尿病组，而疾病对CHD组同胞兄弟姐妹的影响最大。患有慢性病儿童的同胞兄弟姐妹的生活质量与同龄人相似。调查同胞兄弟姐妹生活质量或疾病对同胞兄弟姐妹影响的研究应包括疾病的日常需求以及不太明显的与疾病相关的问题，如“隐性压力”和“控制感”。
