多发性硬化症患者的经验和挑战以及临床随访的低出席率:一项定性研究
Agata Beczek1,2, S G Roikjær3,4,5, C Simonÿ3,4
1Department of Neurology, Zealand University Hospital, Roskilde, Denmark. abecz@regionsjaelland.dk.
BMC neurology
|March 14, 2025
概括
患有多发性硬化症 (MS) 的人没有定期参加专业护理,面临着影响自我护理的重大认知和身体挑战. 医疗保健途径的中断和被系统低估的感觉进一步复杂化了他们的健康管理.
科学领域:
- 神经学 神经学
- 公共卫生 公共卫生
- 定性研究是一种定性研究.
背景情况:
- 有限的研究存在于多发性硬化症 (MS) 患者所面临的挑战,他们无法获得专业护理.
- 在欧洲,许多患有多发性硬化症的人经历了获得基本治疗和护理的限制.
- 这项研究解决了理解那些不参加专门的多发性硬化诊所的人的经历的差距.
研究的目的:
- 探索丹麦MS患者的经验和挑战,这些患者在专业的MS诊所没有定期的随访.
- 专注于这种患者群体遇到的自我护理策略和困难.
主要方法:
- 一项使用个人半结构面试的定性研究.
- 根据布劳恩和克拉克的方法进行了主题分析.
- 在丹麦2022年9月至2024年2月期间采集的数据,使用NVivo软件用于数据管理.
主要成果:
- 包括15名参与者 (73%为女性,53%为复发性复发性多发性硬化,60%未接受治疗).
- 确定的主要主题是:"认知和身体障碍" (分裂,自我护理谈判) 和"护理途径的障碍" (老龄化,影响自我护理的医疗保健差距).
- 参与者报告症状管理不足,感觉被低估,症状识别有限,阻碍自我管理.
结论:
- 没有定期参加专业护理的MS患者会遇到身体和认知方面的挑战,这些挑战会影响自我护理.
- 医疗保健途径的碎片化和缺乏系统认可阻碍了有效的症状和疾病进展管理.
- 这些障碍显著影响了参与者有效管理健康和日常生活的能力.
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