Objective Sickle cell disease (SCD) is a group of inherited blood disorders. The central feature of this chronic condition is pain. Several identified risk factors exacerbate the impact of pain on quality of life (QOL) in SCD; however, there are relatively fewer investigations of strengths-based resilience variables that might buffer the influence of pain on living with SCD. The purpose of this study was to examine strength-based resilience processes in youth with SCD and their parents. Grounded in an ecological resilience-risk model, we evaluated whether adolescent and parent protective factors (pain acceptance, mindfulness, and psychological flexibility) moderated the relation between adolescent-reported pain burden and QOL. Methods Ninety-three 12- to 18-year-old adolescents with SCD and their parents participated. Adolescents completed assessments of pain characteristics, pain acceptance, mindfulness, and QOL. Parents completed instruments measuring demographic and disease variables and parent psychological flexibility. Results Pain variables were associated with protective factors in predicted directions. Adolescent acceptance and mindfulness were positively correlated with QOL. Parent psychological flexibility and adolescent QOL were not related. After controlling for demographic, pain, and disease variables, moderation analyses indicated that adolescent pain acceptance buffered the relation between SCD pain burden and QOL. Moderation analyses were not significant for adolescent mindfulness or parent psychological flexibility. Conclusions Results suggest that strengths-based factors may play an important role for adolescents’ QOL within the context of SCD pain. Interventions that enhance teenagers’ ability to accept pain might be particularly useful to improve QOL in adolescents living with SCD pain.

中文翻译：

---

小儿镰状细胞病的疼痛和生活质量：恢复过程的缓冲

目的镰状细胞病（SCD）是一组遗传性血液病。这种慢性病的主要特征是疼痛。几个已确定的风险因素加剧了疼痛对 SCD 患者生活质量 (QOL) 的影响；然而，对于可能缓冲疼痛对 SCD 患者生活影响的基于优势的复原力变量的研究相对较少。本研究的目的是检查 SCD 青少年及其父母基于力量的复原力过程。基于生态恢复风险模型，我们评估了青少年和父母的保护因素（疼痛接受、正念和心理灵活性）是否调节了青少年报告的疼痛负担与 QOL 之间的关系。方法 93 名 12 至 18 岁 SCD 青少年及其父母参加。青少年完成了对疼痛特征、疼痛接受度、正念和生活质量的评估。父母完成了测量人口统计和疾病变量以及父母心理灵活性的工具。结果疼痛变量与预测方向的保护因素相关。青少年接受度和正念与生活质量呈正相关。父母心理灵活性与青少年生活质量无关。在控制人口统计学、疼痛和疾病变量后，适度分析表明青少年疼痛接受缓冲了 SCD 疼痛负担和 QOL 之间的关系。适度分析对于青少年正念或父母的心理灵活性并不显着。结论 结果表明，在 SCD 疼痛的背景下，基于优势的因素可能对青少年的 QOL 起重要作用。增强青少年接受疼痛能力的干预措施可能对改善患有 SCD 疼痛的青少年的生活质量特别有用。