Case Western Medical School (LM McLachlan), Cleveland, Ohio.
Jose F. Alvarado and Associates (S Engster), Salisbury, Md.
Acad Pediatr. 2024 Sep-Oct;24(7):1133-1140. doi: 10.1016/j.acap.2024.04.002. Epub 2024 Apr 10.
Provide an in-depth and psychometrically rigorous profile of the emotional well-being and sleep-related health of family caregivers of children with medical complexity (CMC).
Cross-sectional survey study of family caregivers of CMC receiving care from a pediatric complex care center between May 2021 and March 2022. Patient Reported Outcomes Measurement Information System Short-Forms (PROMIS-SF) assessed global mental health, emotional distress (anxiety, depression, anger), psychological strengths (self-efficacy, emotional regulation, meaning and purpose), and sleep-related health (fatigue, sleep-related impairment). Student's t-tests compared the sample's mean T-scores to US population norms. Pearson's correlation coefficient (ρ) examined associations between measures of psychological strengths and emotional distress. Unadjusted linear regression analyses explored relationships between well-being outcomes and child and caregiver characteristics.
Compared to US population norms, caregivers of CMC (n = 143) reported significantly lower global mental health and emotional regulation ability as well as elevated symptoms of anxiety, depression, anger, fatigue, and sleep-related impairment (all P < .01). Whereas participants reported a significantly higher sense of meaning and purpose (P < .05), levels of self-efficacy were not significantly different from population norms. We observed moderate-to-strong inverse relationships between psychological strengths and emotional distress (ρ range, -0.39 to -0.69); with the strongest inverse associations found between emotional regulation ability and emotional distress. In exploratory analyses, caregiver race and ethnicity, socioeconomic status, and child health insurance type were significantly associated with caregiver well-being.
Family caregivers of CMC report poor well-being, most notably, increased symptoms of anxiety and reduced global mental health and sleep-related health.
深入了解并严格评估患有复杂疾病儿童（CMC）的家庭照护者的情绪健康和与睡眠相关的健康状况。
这是一项横断面调查研究，研究对象为 2021 年 5 月至 2022 年 3 月期间在一家儿科综合护理中心接受治疗的 CMC 的家庭照护者。患者报告的结局测量信息系统简表（PROMIS-SF）评估了整体心理健康、情绪困扰（焦虑、抑郁、愤怒）、心理优势（自我效能、情绪调节、意义和目的）以及与睡眠相关的健康（疲劳、睡眠相关障碍）。学生 t 检验比较了样本的平均 T 分数与美国人群常模。皮尔逊相关系数（ρ）评估了心理优势和情绪困扰之间的关联。未调整的线性回归分析探讨了幸福感结果与儿童和照护者特征之间的关系。
与美国人群常模相比，CMC 的家庭照护者（n=143）报告的整体心理健康和情绪调节能力明显较低，焦虑、抑郁、愤怒、疲劳和睡眠相关障碍的症状明显升高（均 P<.01）。尽管参与者报告的意义和目的感明显较高（P<.05），但自我效能感与人群常模没有显著差异。我们观察到心理优势与情绪困扰之间存在中度至强的反向关系（ρ 范围为-0.39 至-0.69）；情绪调节能力与情绪困扰之间存在最强的负向关联。在探索性分析中，照护者的种族和民族、社会经济地位以及儿童的健康保险类型与照护者的幸福感显著相关。
CMC 的家庭照护者报告的幸福感较差，尤其是焦虑症状增加，整体心理健康和与睡眠相关的健康状况下降。
