慢性疼痛患儿状细胞疾病的经验:一种定性研究
Soumitri Sil1, Jan T Mooney2, Sharon Shih3
1Department of Pediatrics, Emory University School of Medicine.
概括
患有状细胞疾病 (SCD) 的儿童经历慢性疼痛,影响学校,社会生活和家庭. 根据个人和家庭需求量身定制治疗是改善疼痛管理和参与的关键.
科学领域:
- 儿科心理学 儿科心理学
- 疼痛管理 疼痛管理
- 青少年健康 青少年健康
背景情况:
- 慢性疼痛是患有状细胞疾病 (SCD) 的儿童面临的重大挑战.
- 了解儿童和家长的生活经验对于有效管理至关重要.
- 现有的治疗方法可能无法完全解决SCD疼痛的多面性质.
研究的目的:
- 描述儿童和家长为中心的慢性状细胞疼痛及其管理的经验.
- 检查非药物行为治疗的文化相关的治疗偏好.
- 确定SCD儿童行为治疗的促进者和障碍.
主要方法:
- 定性,参与式的方法与14个儿童-家长双节.
- 进行了个别的半结构面试.
- 对面试指南的代改进,编码和分析确保了深度.
主要成果:
- 三个主题出现了: (a) 疼痛经历和管理影响 (学校,社会,自主), (b) 父母/家庭功能 (压力,内,支持需求),以及 (c) 治疗偏好 (提供者信任,技能获取).
- 慢性疼痛显著影响日常生活,增加压力,影响社会和学术参与.
- 父母经历了相当大的压力和内,突出了社区和家庭支持的需要.
结论:
- 患有SCD的儿童和他们的护理人员认为疼痛是复杂的,并且取决于背景.
- 干预措施必须适应个人和家庭的需要,以改善参与.
- 优化健康需要解决独特的经验,以增强行为疼痛干预措施.
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