了解父母在英格兰对有医疗复杂性的儿童的照顾经验:一种定性研究
Emma Victoria McLorie1, Julia Hackett2, Lorna Katharine Fraser3
1Department of Health Sciences, University of York, York, UK emma.mclorie@york.ac.uk.
BMJ paediatrics open
|August 7, 2023
概括
患有医疗复杂性的孩子的父母经常觉得医疗保健服务被抛弃了,面临着持续的挑战,需要更多的结构化支持. 尽管几十年来已经确定了这些需求,但在改善这些家庭的护理协调和资源方面几乎没有取得进展.
科学领域:
- 儿科医疗保健 儿科医疗保健
- 以家庭为中心的护理
- 医疗保健服务研究 医疗服务研究
背景情况:
- 患有医疗复杂性 (CMC) 的儿童需要持续的,多方面的医疗干预.
- 父母的经验对于了解CMC护理的有效性和差距至关重要.
- 现有的支持系统往往无法满足这些家庭复杂的需求.
研究的目的:
- 探索和理解父母照顾有医疗复杂性的孩子的生活经历.
- 确定CMC家庭在医疗保健旅程中的关键挑战和促进者.
- 为改善对这些弱势群体的支持提供政策和实践的信息.
主要方法:
- 在英格兰,使用半结构面试对患有医疗复杂性的儿童的父母进行定性研究.
- 数据分析利用反射主题分析来识别反复出现的主题和模式.
- 涉及四个医院的20名家长,完成了17次采访.
主要成果:
- 出现了四个主要主题:父母被遗弃的感觉,护理连续性的问题,与医疗设备相关的障碍,以及慈善机构在填补服务缺口方面的作用.
- 父母报告医疗保健质量不一致,积极的经历突出了连续性,沟通和关系,与持久的,长期存在的挑战形成对比.
- 父母经常承担广泛的照顾角色,但缺乏足够的支持,表明需要更结构化的帮助.
结论:
- 医疗复杂性儿童的医疗保健提供不一致,几十年来存在重大挑战.
- 父母需要增强,结构化的支持超越他们的父母角色来管理孩子的复杂需求.
- 政策制定者和医疗保健专员必须优先考虑这些家庭的需求,以改善卫生和社会护理服务.
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