"无法养我饥饿的孩子":照顾普拉德-威利综合征儿童的母亲的经历
Genevieve Currie1, Andrew Estefan2, Vera Caine3
1Mount Royal University, Calgary, AB, Canada.
Global qualitative nursing research
|April 1, 2024
概括
照顾患有普拉德-威利综合征 (PWS) 的孩子的母亲因缺乏治疗而面临重大挑战. 他们的非凡护理实践突出了复杂的需求和系统性差距,需要新的干预措施和支持模型.
科学领域:
- 儿科护理 儿科护理
- 家庭照顾 家庭照顾
- 遗传疾病 遗传性疾病
背景情况:
- 普拉德-威利综合征 (PWS) 给护理人员带来了独特的挑战.
- 母亲的经验和对PWS儿童的护理实践研究不足.
- 由于没有PWS治疗,因此需要密集的家长照顾,以确保安全和幸福.
研究的目的:
- 探索母亲照顾患有PWS的孩子的生活经历.
- 确定日常护理实践的性质和相关的挑战.
- 为制定干预措施和政策建议提供信息.
主要方法:
- 定性叙事调查. 定性叙事调查.
- 与加拿大母亲进行了一年多的长途采访 (8-12次).
- 叙事叙述的协作共同组成.
主要成果:
- 母亲从事广泛的,严格的护理工作,以管理高和自我伤害风险.
- 照顾创造了与社会期望和外部判断的紧张关系.
- 目前的医疗保健和社会护理体系存在显著的差距.
- (特殊) 护理实践对于日常管理PWS至关重要.
结论:
- 当前的护理实践往往是不可持续的,需要系统性的转变.
- 重新构思护理工作和探索替代护理模式至关重要.
- 政策和实践必须解决PWS家庭的复杂需求.
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