危机与照顾之间:患有状细胞贫血的童年现实:一种定性研究
Aybike Şaşmaz1, Atiye Karakul2
1Mersin University Hospital, Pediatric Hematology/Oncology Services, Mersin, Turkey.
Journal of pediatric nursing
|February 20, 2026
概括
患有状细胞贫血 (SCA) 的儿童面临着严重的情绪痛苦和社会挑战. 这些生活经历,包括痛苦,恐惧和欺凌,深深地影响了他们的福祉.
科学领域:
- 儿科血液学 儿科血液学
- 儿童心理学 儿童心理学
- 生活质量研究 研究 生命质量研究
背景情况:
- 细胞贫血 (SCA) 是一种慢性疾病,影响儿童的整体健康.
- 了解患有SCA的儿童的生活经历对于有效的护理至关重要.
研究的目的:
- 质量地探索被诊断患有状细胞贫血的儿童的生活经历.
- 确定SCA儿科患者面临的多方面的挑战.
主要方法:
- 对17名患有SCA的儿童的数据进行了定性分析.
- 通过个人采访,入门表格和半结构化采访收集数据.
- 使用Colaizzi的七步方法和MAXQDA软件进行分析.
主要成果:
- 确定了七个主题,包括情绪负担 (无助,恐惧,悲伤),痛苦的危机,治疗,家庭,社会和学校生活.
- 儿童报告说,由于SCA,他们感到"受到惩罚和限制".
- 他们注意到对家庭关系,社交生活,学业成绩和同行欺凌的增加产生负面影响.
结论:
- 患有SCA的儿童经历了深刻的情感痛苦和社会困难,经常掩盖了身体疼痛.
- 保护性的父母态度和"异性"的感觉极大地塑造了他们的生活经历.
- 儿科护士,教育工作者和公众必须解决SCA的情感和社会影响.
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