青少年患有重症血症的经历:一项现象学研究/青少年的经历
Münevver Erkul1, Zeynep Öztürk2
1Antalya Bilim University, Faculty of Health Sciences, Döşemealtı/Antalya, Turkey.
Journal of pediatric nursing
|January 11, 2026
概括
患有大血病 (TM) 的青少年在日常生活中面临重大挑战,影响学业和社会互动. 了解他们的经历是开发更好,个性化的护理策略以改善福祉的关键.
科学领域:
- 儿科血液学 儿科血液学
- 青少年心理学 青少年心理学
- 质量健康研究 质量健康研究
背景情况:
- 重症血症 (TM) 是一种慢性遗传性血液疾病,需要终身治疗.
- 青春期是一个关键的发展时期,有着独特的心理社会挑战.
- 以患者为中心的护理策略对于优化慢性疾病的治疗结果至关重要.
研究的目的:
- 探讨被诊断患有大沙血病的青少年的生活经历.
- 了解这些青少年所使用的应对机制.
- 为 TM 青少年制定量身定制的,以患者为中心的护理策略提供信息.
主要方法:
- 使用半结构面试进行定性现象学设计.
- 目的性采样十名青少年 (12-18岁) 患有重型 Thalassemia.
- 科拉伊兹的七步方法用于转录分析,确保可信度.
主要成果:
- 六个主要主题出现了:接受疾病,对学校教育的影响,同行/社会反应,家庭动态,治疗坚持/移植考虑,以及心理应对策略.
- 青少年将TM融入日常生活,克服耻辱感,并依靠家庭的支持.
- 挑战包括治疗负担,学术压力和心理困扰,这些都被积极的应对机制所抵消.
结论:
- 患有TM的青少年面临着影响教育,社会生活,心理状态和治疗的多方面的挑战.
- 对长期适应和福祉而言,采用全面的,对发育敏感的方法至关重要.
- 综合心理社会支持,以家庭为中心的实践和学校的合作对于护理至关重要.
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