用JUMP计划为脊柱裂患者提供过渡指导:一个试点研究
Neurosurgical focus
|August 1, 2024
概括
加入,团结,激励和准备 (JUMP) 计划旨在促进脊柱裂患者从儿科到成人护理的过渡. 虽然一些辅导员实现了个人和学术目标,但在这个患者群体中,辅导模式并没有完全证明有效.
科学领域:
- 医疗过渡护理 医疗过渡护理
- 青少年健康 青少年健康
- 两椎 (SB) 的管理
背景情况:
- 从儿科到成人医疗保健的过渡为脊柱裂患者和家属带来了重大挑战.
- 现有的成人护理机构往往没有足够的设备来处理SB患者的特定需求.
- 青春期和年轻成年期涉及独特的心理压力因素,这些压力因素可能会被慢性疾病加剧.
研究的目的:
- 分析一项旨在支持SB患者在过渡到成人护理期间的试验指导计划的初始结果.
- 评估结构化指导计划在为SB青少年准备终身医疗管理方面的有效性.
- 为了确定成功和挑战,在实施一个指导倡议,为年轻的成年人与脊柱裂变.
主要方法:
- 加入,团结,激励和准备 (JUMP) 计划的发展,这是一个指导倡议,将青少年SB患者与本科生/医学生结合起来.
- 建立个性化的过渡计划,为每个受教者制定临床,自我和父母/监护人的目标.
- 通过与导师的会议,SB项目主任定期监测进展,讨论目标实现和发展领域.
主要成果:
- 在9个月的时间里,形成了13对导师-导师对,其中6对保持定期沟通.
- 门特人经历了诸如获得就业,申请奖学金和上大学等成功.
- 该计划的挑战包括不一致的后续行动,与虚拟平台相关的风险,以及导师和受教者之间的地理障碍.
结论:
- 对于患有脊柱裂的青少年,从儿科到成人护理的过渡仍然是一个重大挑战.
- 交互式课程可能会提高准备力,患者自主性和融入成人医疗保健.
- 导师模式,如在本次脊柱裂计划中实施的,并没有明确地证明成功作为治疗过渡困难的补救措施.
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