Brosig C L, Mussatto K A, Kuhn E M, Tweddell J S
Department of Pediatrics, Medical College of Wisconsin, and Children's Hospital of Wisconsin, Herma Heart Center, Milwaukee, WI 53226, USA.
Pediatr Cardiol. 2007 Jul-Aug;28(4):255-62. doi: 10.1007/s00246-006-0013-4. Epub 2007 May 5.
The purpose of the current study was to assess the psychosocial outcomes of preschool-aged survivors (ages 3-6 years) of hypoplastic left heart syndrome (HLHS; n=13) and transposition of the great arteries (TGA; n=13). Parents completed the following measures: Pediatric Quality of Life Inventory, Impact on the Family Scale, Parenting Stress Index, Parent Behavior Checklist, and Child Behavior Checklist. Quality of life scores did not differ from those of healthy controls. Parents of children with HLHS reported more negative impact of the child's illness on the family and more parenting stress than parents of children with TGA. Parents of both groups of children were more permissive in their parenting style than parents of healthy controls. Children with HLHS had higher rates of attention and externalizing behavior problems than children with TGA. The results highlight the need for practitioners working with these children and families to ask about parental stress, family functioning, and behavioral expectations for the child in the context of routine medical/cardiac follow-up.
本研究的目的是评估左心发育不全综合征（HLHS；n = 13）和大动脉转位（TGA；n = 13）的学龄前幸存者（3至6岁）的心理社会结局。父母完成了以下测评：儿童生活质量量表、对家庭的影响量表、育儿压力指数、父母行为清单和儿童行为清单。生活质量得分与健康对照组无差异。与TGA患儿的父母相比，HLHS患儿的父母报告孩子的疾病对家庭的负面影响更大，育儿压力也更大。两组患儿的父母在育儿方式上比健康对照组的父母更宽松。与TGA患儿相比，HLHS患儿出现注意力和外化行为问题的比率更高。结果强调，在常规医疗/心脏随访中，与这些儿童及其家庭打交道的从业者需要询问父母的压力、家庭功能以及对孩子的行为期望。
