Zavadil Jessica A, Azul Melissa, Carpenter Brian D, Calhoun Cecelia
Department of Pediatrics, Indiana University, Indianapolis, IN 46202, USA.
Department of Psychological and Brain Sciences, Washington University, St. Louis, MO 63103, USA.
Children (Basel). 2025 Mar 21;12(4):394. doi: 10.3390/children12040394.
: Resiliency is critical in coping with stressors associated with chronic health diseases. Sickle cell disease (SCD) is a chronic blood disorder in which familial psychosocial functioning impacts disease outcomes. We hypothesized that caregiver perceived stress and resiliency are related to the resiliency of children with SCD and may influence SCD clinical outcomes. : Child-caregiver dyads completed the Perceived Stress Scale (PSS-10), Connor Davidson-Resilience Scale (CD-RISC), and used a 1-5 Likert scale to rate the frequency of stressors they experience, including the COVID-19 pandemic. : Of the 55 child participants, 36% reported a history of stroke, 7% a bone marrow transplant, and 25% frequent (≥3) emergency room visits within last year. Dyad median resiliency scores (68.5 vs. 75.8) and stress scores (16.1 vs. 15.3) were similar and consistent with population studies. Child resiliency was not associated with child ( = -0.21, = 0.12) or caregiver ( = -0.16, = 0.26) perceived stress. Caregiver and child resiliencies had a significant positive correlation ( = 0.38, = 0.0046) but no relationship across dyads with perceived stress scores. Children with one to two hospitalizations within the last year had significantly lower median resiliency scores compared with those who had experienced no hospitalizations (median 65 vs. 76, = 0.0386), but displayed no relationship with genotype, history of stroke, or stem cell transplant. During the COVID-19 pandemic, both groups rated "worry about my/my child's sickle cell disease" as the most frequent psychosocial stressor. : In a cross-sectional cohort study that explored the relationship between caregiver resiliency and child resiliency in SCD, we found that caregiver resiliency and child resiliency were strongly correlated, while child resiliency showed no significant association with perceived stress. Higher child resiliency scores were associated with fewer hospitalizations. The results indicate the need for interventions to increase both child and caregiver resiliency in SCD, as it may contribute to health outcomes in SCD. Further research is needed to explore cofounding factors influencing resiliency in children with SCD.
复原力对于应对与慢性健康疾病相关的压力源至关重要。镰状细胞病（SCD）是一种慢性血液疾病，其中家庭心理社会功能会影响疾病预后。我们假设照顾者感知到的压力和复原力与患有SCD的儿童的复原力相关，并且可能影响SCD的临床结果。儿童-照顾者二元组完成了感知压力量表（PSS-10）、康纳·戴维森复原力量表（CD-RISC），并使用1-5李克特量表对他们经历的压力源频率进行评分，包括新冠疫情。在55名儿童参与者中，36%报告有中风病史，7%接受过骨髓移植，25%在去年有频繁（≥3次）急诊就诊。二元组的中位复原力得分（68.5对75.8）和压力得分（16.1对15.3）相似，且与人群研究一致。儿童复原力与儿童（r = -0.21，p = 0.12）或照顾者（r = -0.16，p = 0.26）感知到的压力无关。照顾者和儿童的复原力有显著正相关（r = 0.38，p = 0.0046），但二元组之间的感知压力得分没有关系。与没有住院经历的儿童相比，去年有一到两次住院经历的儿童中位复原力得分显著更低（中位数65对76，p = 0.0386），但与基因型、中风病史或干细胞移植无关。在新冠疫情期间，两组都将“担心我/我的孩子的镰状细胞病”列为最常见的心理社会压力源。在一项横断面队列研究中，我们探讨了SCD中照顾者复原力与儿童复原力之间的关系，发现照顾者复原力和儿童复原力密切相关，而儿童复原力与感知压力没有显著关联。儿童复原力得分越高，住院次数越少。结果表明需要采取干预措施来提高SCD中儿童和照顾者的复原力，因为这可能有助于改善SCD的健康结果。需要进一步研究以探索影响SCD儿童复原力的混杂因素。
