面对肌缩性侧面硬化症的父母导航:对伴侣经验的定性探索
Anne Kristine Bergem1, Trude Aamotsmo2
1The Norwegian Psychiatric Association, Oslo, Norway.
Scandinavian journal of caring sciences
|July 11, 2024
概括
肌缩侧面硬化症 (ALS) 患者的伴侣经常感到孤立,平衡对伴侣和孩子的照顾. 他们需要加强医疗保健服务的以家庭为中心的支持,以应对日常挑战.
科学领域:
- 抚慰性护理是一种缓解性护理.
- 家庭医学 家庭医学 家庭医学
- 卫生社会学 卫生社会学
背景情况:
- 肌缩侧面硬化症 (ALS) 显著影响家庭动态,特别是在有孩子的情况下.
- 患有严重疾病的父母的孩子面临着增加的压力和健康风险.
- 挪威的医疗保健政策要求对ALS患者的孩子进行支持评估.
研究的目的:
- 探索合作伙伴在抚养孩子时照顾患有ALS的个体的经验.
- 确定这些合作伙伴的支持需求,这些合作伙伴同时是照顾者和父母.
- 了解在生命限制疾病的背景下成为"近亲"和父母的挑战.
主要方法:
- 使用半结构面试进行的定性研究.
- 与六个ALS患者的伴侣进行,他们有孩子住在家里.
- 使用定性内容分析分析的数据.
主要成果:
- 伴侣们报告说,他们感觉"在一起,却孤独",在家庭生活受到限制和父母责任不平等的情况下扎.
- 他们描述了"在等待死亡时"的应对,珍惜时刻但感到担忧.
- 参与者发现很难寻求网络支持,并认为医疗保健系统忽视了整个家庭的需求.
结论:
- 在家有孩子的ALS患者的伴侣经历了深刻的孤立和未满足的支持需求.
- 医疗保健服务必须采取以家庭为中心的视角来治疗限制生命的疾病.
- 干预措施应解决情感和实际需求,并纳入同行支持.
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