提前护理规划的家长经验:重建意义 - 基于理论的理论
Helen Elizabeth Bennett1, Sue Duke2, Alison Richardson3
1Alexander Devine Children's Hospice Service, Maidenhead, UK helenb@alexanderdevine.org.
BMJ supportive & palliative care
|September 12, 2023
概括
父母发现,为患有终身疾病的孩子提前护理计划 (ACP) 是一个有价值的治疗过程. 参与ACP有助于家长做出明智的决定,并建立弹性,尽管在情绪上的痛苦.
科学领域:
- 儿科缓和护理 儿科缓和护理
- 以家庭为中心的护理
- 生物伦理学生物伦理学
背景情况:
- 患有终身疾病的孩子的父母对预先护理计划 (ACP) 有独特的见解.
- 对于家长的经验和管理他们的孩子的非洲和非洲国家/地区流程的理解有限.
研究的目的:
- 探索和理解父母在预先为患有生命限制疾病的孩子进行护理规划方面的生活经验.
主要方法:
- 采用了构造主义和情境基础理论方法.
- 通过对13名家长进行半结构面试和对9个预先照顾计划的分析来收集数据.
- 参与者包括儿童 (0-17岁) 的父母,他们的生命受到限制或危及生命的条件.
主要成果:
- 父母的经历被分为以下几类:实现,调和紧张局势,建立信心和控制权.
- "通过事先的护理计划重建意义"的基础理论出现了.
- 在复杂的情况下,ACP使父母能够做出"好的"决定,并提供治疗价值,尽管有情绪上的痛苦.
结论:
- 家长们积极希望参与ACP,利用ACP与治疗决策调整价值观.
- 对于家长来说,ACP过程具有未被承认的治疗价值.
- 医疗保健专业人员应该重新构建ACP对话,以重视家长的投入,控制,并赋予他们未来决策的权力,培养希望和性.
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