为患有复杂神经障碍的儿童的家长/照顾者提供一个共同适应的社区参与型小组计划 (Encompass-2):试点和可行性研究协议
Kirsten Prest1,2, Angela Harden3, Kirsten Barnicot3
1School of Health and Psychological Sciences, City, University of London, London, UK. Kirsten.prest@city.ac.uk.
这项研究试行了"包围"计划,这是一个为患有复杂神经障碍儿童的父母提供非殖民化,以家庭为中心的护理创新. 研究结果表明,这是一种负担得起的,可持续的模式,可以改善家长的福祉和导航卫生系统.
科学领域:
- 医疗保健创新 医疗保健创新
- 家庭为中心的护理.
- 复杂的神经障碍的支持.
背景情况:
- 患有复杂神经障碍儿童的父母往往缺乏足够的以家庭为中心的照顾.
- "包围"计划是一个基于社区的,参与性的小组干预,来自乌干达.
- 它代表了一种"非殖民化的医疗保健创新",适合于像英国国家卫生服务 (NHS) 这样的资源有限的环境.
研究的目的:
- 评估交付和评估"Encompass"计划的可行性和可接受性.
- 确定该计划的潜力,以改善复杂神经障碍的幼儿的父母/护理人员的结果.
- 在NHS中探索该计划的可持续性和可负担性.
主要方法:
- 一项混合方法的试点可行性研究,涉及20名5岁以下患有复杂神经障碍儿童的父母/照顾者.
- 一个由10个模块组成的,为期6个月的参与式小组课程,由卫生专业人员和"专家家长"协助.
- 通过前,后和后续调查问卷 (包括FES,P-PAM,WEMWBS,EQ-5D-5L) 和参与者,辅导员和NHS合作伙伴的干预后访谈收集数据.
主要成果:
- 该研究将评估招聘,保留和接受率.
- 将对干预的忠实性和参与者的坚持性进行评估.
- 结果将根据预定义的交通信号灯标准进行评估,以确定可行性.
结论:
- 基于社区的参与性小组计划为NHS的以家庭为中心的支持提供了负担得起和可持续的方法.
- "包围"计划有可能提高父母/护理人员的知识,技能,信心,福祉和生活质量.
- 它促进同行支持,并使父母能够在社区卫生系统中导航.
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