Objective The objective of this study was to investigate the relationship between parental stress and health-related quality of life (HRQOL) among children with sickle cell disease (SCD). Methods A cross-sectional correlational survey research design was used for this quantitative study. One hundred-fifty patients between the ages of 8–17 years old and their caregivers were enrolled from an outpatient comprehensive sickle cell program within a hospital setting. Patients completed the Pediatric Quality of Life Scale 3.0 SCD Module, whereas parents completed the Parental Stress Scale and demographic information questionnaire. Multiple regression analysis was used to determine if parental stress scores predicted the HRQOL of children diagnosed with SCD after controlling for demographic variables. Results The sample included 150 patients (median age: 12 years old; female: 52%) who were diagnosed with SCD along with 150 of their caregivers. Higher levels of parental stress predicted lower HRQOL scores (p < .001). Conclusion As parents reported elevated levels of stress related to caring for their child with SCD, patients reported worsening HRQOL. More evidence is needed in order to determine, which constructs of parental stress had a significant impact on HRQOL. It may be helpful for healthcare workers to be aware of familial influences of reduced HRQOL among children diagnosed with SCD. Parents reporting increased stress related to raising their child with SCD may benefit from additional support and resources.

中文翻译：

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镰状细胞病青少年的父亲压力和儿童结局

目的 本研究旨在探讨镰状细胞病（SCD）患儿父母压力与健康相关生活质量（HRQOL）的关系。方法本次定量研究采用横断面相关调查研究设计。150 名年龄在 8-17 岁之间的患者及其护理人员参加了医院环境中的门诊综合镰状细胞计划。患者完成了儿科生活质量量表 3.0 SCD 模块，而父母完成了父母压力量表和人口统计信息问卷。在控制人口统计学变量后，多元回归分析用于确定父母压力评分是否能预测诊断为 SCD 的儿童的 HRQOL。结果 样本包括 150 名患者（中位年龄：12岁；女性：52%）与 150 名护理人员一起被诊断出患有 SCD。较高水平的父母压力预示着较低的 HRQOL 得分 (p < .001)。结论 由于父母报告与照顾 SCD 孩子相关的压力水平升高，患者报告 HRQOL 恶化。需要更多的证据来确定父母压力的哪些结构对 HRQOL 有显着影响。医护人员了解被诊断患有 SCD 的儿童 HRQOL 降低对家庭的影响可能会有所帮助。报告与抚养患有 SCD 的孩子有关的压力增加的父母可能会受益于额外的支持和资源。结论 由于父母报告与照顾 SCD 孩子相关的压力水平升高，患者报告 HRQOL 恶化。需要更多的证据来确定父母压力的哪些结构对 HRQOL 有显着影响。医护人员了解被诊断患有 SCD 的儿童 HRQOL 降低对家庭的影响可能会有所帮助。报告与抚养患有 SCD 的孩子有关的压力增加的父母可能会受益于额外的支持和资源。结论 由于父母报告与照顾 SCD 孩子相关的压力水平升高，患者报告 HRQOL 恶化。需要更多的证据来确定父母压力的哪些结构对 HRQOL 有显着影响。医护人员了解被诊断患有 SCD 的儿童 HRQOL 降低对家庭的影响可能会有所帮助。报告与抚养患有 SCD 的孩子有关的压力增加的父母可能会受益于额外的支持和资源。医护人员了解被诊断患有 SCD 的儿童 HRQOL 降低对家庭的影响可能会有所帮助。报告与抚养患有 SCD 的孩子有关的压力增加的父母可能会受益于额外的支持和资源。医护人员了解被诊断患有 SCD 的儿童 HRQOL 降低对家庭的影响可能会有所帮助。报告与抚养患有 SCD 的孩子有关的压力增加的父母可能会受益于额外的支持和资源。