Institute of Human Genetics, Heidelberg University, Heidelberg, Germany.
Section for Neuropediatrics and Inborn Errors of Metabolism, University Children's Hospital, Clinic I, Heidelberg, Germany.
J Appl Res Intellect Disabil. 2019 Sep;32(5):1129-1137. doi: 10.1111/jar.12602. Epub 2019 Apr 15.
Caring for a child with intellectual disability (ID) has been associated with increased social and psychological burdens. Diagnostic and prognostic uncertainty may enhance emotional stress in families.
The present authors assessed the motivations, expectations, mental health, physical health and the quality of life of 194 parents whose children with intellectual disability were undergoing a genetic diagnostic workup.
Most parents considered a diagnosis highly relevant for their own emotional relief, their child's therapies and education, or family planning. Parental mental health was significantly lower compared with the normative sample, but physical health was not different. The severity of the child's intellectual disability correlated negatively with their parents' mental and physical health, quality of life, and positively with parental anxiety.
Healthcare providers should be aware of the disadvantages facing families with intellectually disabled children. Receiving practical, social and psychological support as well as genetic testing might be particularly relevant for families with severely disabled children.
照顾智障儿童（ID）会给家庭带来更大的社会和心理负担。诊断和预后的不确定性可能会增加家庭的情绪压力。
本研究评估了 194 名正在接受基因诊断的智障儿童家长的动机、期望、心理健康、身体健康和生活质量。
大多数父母认为诊断对自己的情绪缓解、孩子的治疗和教育或家庭计划非常重要。与常模样本相比，父母的心理健康显著较低，但身体健康没有差异。孩子智力残疾的严重程度与父母的心理健康、身体健康、生活质量呈负相关，与父母的焦虑呈正相关。
医疗保健提供者应该意识到智障儿童家庭面临的不利情况。为有严重残疾儿童的家庭提供实际的、社会心理方面的支持以及基因检测可能尤为重要。
