Caris Elizabeth C, Dempster Nicole, Wernovsky Gil, Butz Catherine, Neely Trent, Allen Robin, Stewart Jamie, Miller-Tate Holly, Fonseca Rachel, Texter Karen, Nicholson Lisa, Cua Clifford L
Nationwide Children's Hospital, Columbus, Ohio.
Nicklaus Children's Hospital, Columbus, Ohio.
Congenit Heart Dis. 2016 Dec;11(6):727-732. doi: 10.1111/chd.12387. Epub 2016 Jun 20.
Caring for children with congenital heart disease places significant stress on caregivers. Minimal data exist evaluating stress levels in caregivers of children with hypoplastic left heart syndrome (HLHS). The goal of this study was to obtain baseline stress scores for caregivers of children with HLHS and determine if associations exist between scores and specific caregiver factors.
A cross-sectional study using a web-based survey targeted towards caregivers of children with HLHS was performed. Baseline demographics of the caregiver and child with HLHS were obtained. Caregivers completed three validated questionnaires including the Pediatric Quality of Life Inventory (PedsQL), Parenting Stress Index- Short Form (PSI-SF) and the Pediatric Inventory for Parents (PIP).
Four hundred fifty-nine caregivers completed at least one questionnaire. PSI-SF total score was 80.5 ± 23.1 (> 86 = significant stress), PIP frequency total score was 119.0 ± 37.2, and PIP difficulty total score was 118.1 ± 35.7. Lower quality of life was significantly correlated with higher scores on the PSI-SF (r = -0.6), the presence of a developmental issue in the child (r = 0.3) as well as higher scores on the PIP frequency (r = -0.5) and difficulty scales (r = 0.4). Other demographic values for the caregiver and child did not significantly correlate with PSI or PIP total scores.
Anxiety/stress scores of caregivers with children with HLHS are correlated with how well the child is perceived to be doing physically and developmentally by the caregivers. Caregivers with physical and/or developmental concerns may need added psychosocial support.
照顾先天性心脏病患儿给照料者带来了巨大压力。关于左心发育不全综合征（HLHS）患儿照料者压力水平的评估数据极少。本研究的目的是获取HLHS患儿照料者的基线压力评分，并确定评分与特定照料者因素之间是否存在关联。
采用基于网络的调查问卷对HLHS患儿的照料者进行了一项横断面研究。获取了照料者和HLHS患儿的基线人口统计学数据。照料者完成了三份经过验证的问卷，包括儿童生活质量量表（PedsQL）、育儿压力指数简表（PSI-SF）和父母育儿量表（PIP）。
459名照料者至少完成了一份问卷。PSI-SF总分是80.5±23.1（>86=显著压力），PIP频率总分是119.0±37.2，PIP困难总分是118.1±35.7。较低的生活质量与PSI-SF较高得分（r=-0.6）、患儿存在发育问题（r=0.3）以及PIP频率较高得分（r=-0.5）和困难量表得分（r=0.4）显著相关。照料者和患儿的其他人口统计学值与PSI或PIP总分无显著相关性。
HLHS患儿照料者的焦虑/压力评分与照料者对患儿身体和发育状况的感知程度相关。存在身体和/或发育问题的照料者可能需要额外的心理社会支持。
