Hildenbrand Aimee K, Barakat Lamia P, Alderfer Melissa A, Marsac Meghan L
*Center for Injury Research and Prevention ‡Division of Oncology, The Children's Hospital of Philadelphia †Department of Psychology, Drexel University §Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA.
J Pediatr Hematol Oncol. 2015 Jan;37(1):25-34. doi: 10.1097/MPH.0000000000000092.
The ways in which a family copes with the physical and psychosocial burdens of sickle cell disease (SCD) can influence the child and family functioning. However, few studies have examined SCD-related stressors beyond pain or how children and parents cope with these stressors. This study aimed to describe child coping and parent attempts to help their children cope (ie, coping assistance) with a range of SCD stressors by using a triangulated mixed methods design. We also explored convergence between findings from qualitative interviews and quantitative coping inventories. Fifteen children (aged 6 to 14 years) with SCD and their parents (N=15) completed semistructured interviews and self-report measures to assess SCD-related stressors, coping, and coping assistance strategies. Findings indicate that children experience numerous stressors related to SCD and its treatment, including, but not limited to, pain. To manage these stressors, families employ a range of approach and avoidance-oriented coping strategies. Quantitative and qualitative assessments provided complementary and unique contributions to understanding coping processes among children with SCD and their parents. Examining a broad range of stressors and integrating multiple assessment methods helps improve our understanding of coping with pediatric SCD, which may inform clinical practice and family-focused intervention development.
家庭应对镰状细胞病（SCD）的身体和心理社会负担的方式会影响儿童及家庭功能。然而，很少有研究考察除疼痛之外与SCD相关的应激源，或者儿童及父母如何应对这些应激源。本研究旨在通过采用三角混合方法设计，描述儿童的应对方式以及父母帮助其子女应对（即应对协助）一系列SCD应激源的尝试。我们还探讨了定性访谈结果与定量应对量表结果之间的一致性。15名患有SCD的儿童（年龄在6至14岁之间）及其父母（N = 15）完成了半结构化访谈和自我报告测量，以评估与SCD相关的应激源、应对方式和应对协助策略。研究结果表明，儿童经历了与SCD及其治疗相关的众多应激源，包括但不限于疼痛。为了应对这些应激源，家庭采用了一系列以接近和回避为导向的应对策略。定量和定性评估为理解SCD患儿及其父母的应对过程提供了互补且独特的作用。考察广泛的应激源并整合多种评估方法有助于增进我们对儿科SCD应对方式的理解，这可能为临床实践和以家庭为中心的干预措施发展提供参考。
