PDF(Pubmed)
Abstract：
Facing with an increasing demand for transition to adult care management, our home parenteral nutrition (HPN) team designed an adolescent therapeutic educational program (ATEP) specifically intended for adolescents on long-term HPN. The aim of this study was to report on the first sessions of this program.
UNASSIGNED: The ATEP is designed in three sessions of five consecutive days, during school holidays over the year. It includes group sessions on catheter handling, disconnecting and connecting the PN and catheter dressing, dealing with unforeseen events (e.g., fever or catheter injury), but also sessions with psychologist, social worker, sports teacher, fashion specialist, meeting with adults who received HPN since childhood. Specific course for the accompanying parents were also provided. Six months after the last session, a 3-day trip to the attraction park \"le Futuroscope,\" Poitiers, France, was organized without any parental presence.
UNASSIGNED: After 3 ATEP courses, a total of 16 adolescents have been enrolled. They were aged between 13 and 17 years (median 14 IQR: 14-16.25). All were on long term HPN started during the neonatal period except for four who started PN at a median age of 10 years old (IQR: 1-10). At the time of the ATEP, their median PNDI was 105% (IQR: 95.5-120.8) while receiving a median of six infusions per week (IQR: 5-7). Thirteen received Taurolidine lock procedure. After the ATEP, 11 adolescents could be considered as fully autonomous, 4 as partially autonomous and one failed to gain any autonomy. Course evaluation by adolescents or parents was good to excellent.
UNASSIGNED: Through the holistic and multiprofessional approach of this training and the group cohesion, the adolescents were not only able to handle catheter care and PN connections but were able to understand and accept better their illness and project themselves into their own future.
UNASSIGNED: The ATEP is designed in three sessions of five consecutive days, during school holidays over the year. It includes group sessions on catheter handling, disconnecting and connecting the PN and catheter dressing, dealing with unforeseen events (e.g., fever or catheter injury), but also sessions with psychologist, social worker, sports teacher, fashion specialist, meeting with adults who received HPN since childhood. Specific course for the accompanying parents were also provided. Six months after the last session, a 3-day trip to the attraction park \"le Futuroscope,\" Poitiers, France, was organized without any parental presence.
UNASSIGNED: After 3 ATEP courses, a total of 16 adolescents have been enrolled. They were aged between 13 and 17 years (median 14 IQR: 14-16.25). All were on long term HPN started during the neonatal period except for four who started PN at a median age of 10 years old (IQR: 1-10). At the time of the ATEP, their median PNDI was 105% (IQR: 95.5-120.8) while receiving a median of six infusions per week (IQR: 5-7). Thirteen received Taurolidine lock procedure. After the ATEP, 11 adolescents could be considered as fully autonomous, 4 as partially autonomous and one failed to gain any autonomy. Course evaluation by adolescents or parents was good to excellent.
UNASSIGNED: Through the holistic and multiprofessional approach of this training and the group cohesion, the adolescents were not only able to handle catheter care and PN connections but were able to understand and accept better their illness and project themselves into their own future.
摘要：
面对向成人护理管理过渡的日益增长的需求，我们的家庭肠外营养(HPN)团队设计了一项青少年治疗性教育计划(ATEP),专门针对长期HPN的青少年.这项研究的目的是报告该计划的第一届会议。
■ATEP设计为连续五天的三场会议，在一年的学校假期。它包括关于导管处理的小组会议，断开和连接PN和导管敷料，处理不可预见的事件(例如，发烧或导管损伤)，还有心理学家的会议，社会工作者,体育老师,时尚专家,与从小就接受HPN的成年人会面。还为陪伴父母提供了具体课程。上次会议六个月后，为期3天的景点公园之旅，\"普瓦捷,法国,是在没有任何父母在场的情况下组织的。
■经过3门ATEP课程，共有16名青少年入学。他们年龄在13至17岁之间（中位数14IQR：14-16.25）。除四名在中位年龄为10岁（IQR：1-10）开始PN外，所有人均在新生儿期开始长期HPN。在ATEP的时候,他们的PNDI中位数为105%(IQR:95.5-120.8),而每周接受6次输注的中位数(IQR:5-7).13人接受了牛磺罗定锁定程序。在ATEP之后,11名青少年可以被认为是完全自主的，4为部分自治，一个未能获得任何自治。青少年或家长的课程评价从好到优。
■通过这种培训的整体和多专业方法以及团队凝聚力，青少年不仅能够处理导管护理和PN连接,而且能够更好地理解和接受他们的疾病,并将自己投射到自己的未来.
■ATEP设计为连续五天的三场会议，在一年的学校假期。它包括关于导管处理的小组会议，断开和连接PN和导管敷料，处理不可预见的事件(例如，发烧或导管损伤)，还有心理学家的会议，社会工作者,体育老师,时尚专家,与从小就接受HPN的成年人会面。还为陪伴父母提供了具体课程。上次会议六个月后，为期3天的景点公园之旅，\"普瓦捷,法国,是在没有任何父母在场的情况下组织的。
■经过3门ATEP课程，共有16名青少年入学。他们年龄在13至17岁之间（中位数14IQR：14-16.25）。除四名在中位年龄为10岁（IQR：1-10）开始PN外，所有人均在新生儿期开始长期HPN。在ATEP的时候,他们的PNDI中位数为105%(IQR:95.5-120.8),而每周接受6次输注的中位数(IQR:5-7).13人接受了牛磺罗定锁定程序。在ATEP之后,11名青少年可以被认为是完全自主的，4为部分自治，一个未能获得任何自治。青少年或家长的课程评价从好到优。
■通过这种培训的整体和多专业方法以及团队凝聚力，青少年不仅能够处理导管护理和PN连接,而且能够更好地理解和接受他们的疾病,并将自己投射到自己的未来.
