Department of Pediatrics, 12225University of Colorado School of Medicine, Aurora, CO, USA.
College of Nursing, 15895Medical University of South Carolina, Charleston, SC, USA.
J Pediatr Hematol Oncol Nurs. 2022 Jul-Aug;39(4):209-220. doi: 10.1177/27527530211073874. Epub 2022 Mar 14.
Chronic red cell transfusion (CRCT) therapy is one of a few effective disease-modifying therapies for children with sickle cell anemia (SCA). CRCT is recommended for primary and secondary stroke prevention for at-risk children with SCA and is sometimes used for other disease-related complications. However, CRCT can be resource- and time-intensive for patients/families, providers, and organizations. This study was conducted to provide a comprehensive, multilevel examination of barriers and facilitators to transfusion therapy in children with SCA from health care provider and caregiver perspectives. A qualitative descriptive approach was used to conduct key informant interviews in a sample of 26 caregivers and 25 providers across the United States. Interviews were analyzed using directed content analysis with the Multilevel Ecological Model of Health as an initial coding framework and the constant comparison method. Ten barrier themes and 10 facilitator themes emerged across all ecological levels. Themes most commonly occurred on the patient and organizational levels. Key barriers themes included , , , and . Key facilitator themes included , , , , and . The comprehensive understanding of multilevel barriers and facilitators to transfusion therapy, including the role of nursing, in children with SCA can inform strategies to improve CRCT for patients/families and providers and can also be applied by organizations seeking to implement transfusion services for SCA.
慢性红细胞输注(CRCT)疗法是镰状细胞贫血(SCA)患儿为数不多的有效疾病修正疗法之一。CRCT 推荐用于 SCA 高危儿童的一级和二级卒中预防,有时也用于其他与疾病相关的并发症。然而,CRCT 可能对患者/家庭、医疗服务提供者和医疗机构来说是资源密集型和时间密集型的。本研究旨在从医疗服务提供者和护理人员的角度,对 SCA 患儿输血治疗的障碍和促进因素进行全面、多层次的检查。采用定性描述方法,对美国各地的 26 名护理人员和 25 名提供者进行了关键知情人访谈。采用定向内容分析,以健康多层次生态模型为初始编码框架和恒比法对访谈进行分析。在所有生态层次上都出现了 10 个障碍主题和 10 个促进因素主题。主题最常出现在患者和组织层面。主要障碍主题包括、、、和。主要促进因素主题包括、、、、和。对 SCA 患儿输血治疗的多层次障碍和促进因素的全面理解,包括护理的作用,可以为改善患者/家庭和提供者的 CRCT 提供策略,也可以为寻求实施 SCA 输血服务的组织提供参考。