Kaugars Astrida, Shields Clarissa, Brosig Cheryl
Department of Psychology, Marquette University, Milwaukee, Wisconsin, USA.
Department of Psychological Sciences, Kent State University, Kent, Ohio, USA.
Congenit Heart Dis. 2018 Jan;13(1):72-78. doi: 10.1111/chd.12547. Epub 2017 Oct 25.
The study examined parent stress and health-related quality of life (HRQOL) among families of children with congenital heart disease (CHD) referred for psychological services.
Parents of 54 children (85% boys) aged 3 to 13 (M = 7.48, SD = 2.38) completed measures to assess parenting stress (Parenting Stress Index - Short Form; Pediatric Inventory for Parents) and the PedsQL Family Impact Module. Medical information was retrieved from medical record review.
Half of parents of children with single ventricle anatomy had clinically significant levels of parenting stress. Parents of children with single ventricle anatomy reported more frequent illness-related stress and more difficulty dealing with illness-related stress than parents of children with two ventricle anatomy. Younger gestational age at birth and referral for attention or behavior problems were associated with greater likelihood of parent at-risk psychosocial functioning.
Among children referred for psychological services, many parents report significant stress and significant negative impact of the child's medical condition on the family. Results underscore the need to consider assessing parent psychosocial functioning and providing additional support for parents of children with CHD.
本研究调查了因心理服务前来就诊的先天性心脏病（CHD）患儿家庭中父母的压力及与健康相关的生活质量（HRQOL）。
54名年龄在3至13岁（M = 7.48，标准差 = 2.38）的儿童（85%为男孩）的父母完成了评估养育压力（《养育压力指数 - 简表》；《父母用儿科量表》）和儿童生活质量量表家庭影响模块的测量。医疗信息从病历审查中获取。
单心室解剖结构患儿的父母中有一半存在临床上显著的养育压力水平。与双心室解剖结构患儿的父母相比，单心室解剖结构患儿的父母报告与疾病相关的压力更频繁，且应对与疾病相关的压力更困难。出生时孕周较小以及因注意力或行为问题前来就诊与父母出现心理社会功能风险的可能性更大有关。
在因心理服务前来就诊的儿童中，许多父母报告了巨大压力以及孩子的病情对家庭产生的重大负面影响。研究结果强调需要考虑评估父母的心理社会功能，并为先天性心脏病患儿的父母提供额外支持。
