孩子患有脊柱肌肉缩的父母所经历的情绪:一种定性研究
Didem Coşkun Şimşek1, Kerime Deniz Kiliç Çetin2
1Fırat University, Faculty of Health Sciences, Department of Pediatric Nursing, Elazığ, Turkey.
Journal of pediatric nursing
|December 7, 2024
概括
照顾患有脊髓肌肉缩症 (SMA) 的孩子会导致父母严重的情绪困扰,包括无助感,压力和不快乐. 了解这些挑战对于制定有效的支持策略至关重要.
科学领域:
- 儿科神经学 儿科神经学
- 心理学 心理学 心理学
- 家庭研究 家庭研究
背景情况:
- 脊柱肌缩 (SMA) 需要终身,密集治疗,影响儿童和父母的生活质量.
- 父母的情感福祉受到SMA儿童的照顾需求的显著影响.
研究的目的:
- 探索父母抚养诊断为脊柱肌肉缩的孩子的情感经历.
- 通过现象学镜头了解父母的生活经历.
主要方法:
- 现象学研究设计使用有目的的抽样.
- 与SMA儿童的11名父母进行了深入的半结构面试.
- 根据COREQ的指导方针,对录制的采访数据进行感应性主题分析.
主要成果:
- 五个主要主题出现了:无助,丧,压力,恐惧和不快乐.
- 与接受和时间限制相关的无助感,以及由于疾病症状和被误解的感觉而感到丧是突出的.
- 压力源于重症监护,恐惧包括对死亡率和未来怀孕的担忧.
结论:
- 患有SMA的孩子的父母经历了一系列负面情绪,包括无助,压力,恐惧和不快乐.
- 医疗保健专业人员可以利用这些见解来为父母提供有针对性的心理支持.
- 提高意识和同情心对于改善受 SMA 影响的家庭的护理和支持至关重要.
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