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Journal of sickle cell disease and hemoglobinopathies最新文献

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Understanding the Self-Management Practices of Young Adults with Sickle Cell Disease. 了解镰状细胞病年轻成人的自我管理方法。
Nadine Matthie, Coretta Jenerette

Because self-management is central to sickle cell disease (SCD) management, this descriptive study of 18 young adults with SCD, ages 19-39, was conducted to understand their pain experience and to identify the specific home activities they use for pain prevention and management prior to care-seeking. Participants completed two baseline surveys and one semi-structured, individual interview. Content analysis of the interview transcripts yielded two themes: difficulty in describing pain and living with pain. Participants used pharmacological and non-pharmacological strategies to alleviate pain and avoid disease complications but report barriers to using these strategies. Healthcare providers should use study findings to provide appropriate care to and improve pain outcomes for young adults with SCD. In addition, interventions aimed at addressing barriers and optimizing self-management are needed.

由于自我管理是镰状细胞病 (SCD) 管理的核心,因此我们对 18 名年龄在 19-39 岁之间的 SCD 年轻成人进行了描述性研究,以了解他们的疼痛经历,并确定他们在寻求护理之前用于预防和管理疼痛的具体家庭活动。参与者填写了两份基线调查问卷和一份半结构化个人访谈。对访谈记录的内容分析得出了两个主题:描述疼痛的困难和带着疼痛生活。参与者使用药物和非药物策略来减轻疼痛和避免疾病并发症,但报告了使用这些策略的障碍。医疗服务提供者应利用研究结果为患有 SCD 的年轻成人提供适当的护理并改善疼痛的治疗效果。此外,还需要采取旨在消除障碍和优化自我管理的干预措施。
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Journal of sickle cell disease and hemoglobinopathies
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