TRAINING OF CHILDREN’S AND ADOLESCENTS’ FAMILY MEMBERS IN HOME PARENTERAL NUTRITION CARE

ABSTRACT Objective: To report the experience of the training in home parenteral nutrition (PN) directed to family members of children and adolescents participating in a multidisciplinary intestinal rehabilitation program of a tertiary public hospital. Methods: Cross-sectional descriptive study with family caregivers of patients from the Intestinal Rehabilitation Program of Hospital de Clínicas de Porto Alegre, RS, Brazil, from July/2014 to January/2017. Inclusion criteria: family members of children aged 30 days to 17 years and estimated PN use ≥8 weeks; and family members motivated to care for the child. The training covered: hand washing and disinfection; infusion pump handling; and central venous catheter (CVC) and PN care. Outcomes assessed: catheter-related bloodstream infection (CRBSI) rate, accidental CVC exit, end of PN infusion with more than 60minutes of delay or advance compared to the time predicted, mechanical obstruction, bleeding in the CVC insertion site, and death. Results: Twenty-seven family members of 17 children were trained. Their median age was 28 (18-60) years, and 63% were mothers. The mean CRBSI rate was 1.7/1,000 days of CVC use, and 29.4% of patients had at least one episode of accidental CVC exit. There were no complications related to PN infusion, bleeding, or death. Conclusions: The training of family caregivers allowed the safe implementation of home PN, with the active participation of families, making the procedure feasible in the public health system in Brazil.

摘要
目的：报告巴西南里奥格兰德州阿雷格里港临床医院多学科肠道康复项目中，针对参与该项目的儿童及青少年家属开展家庭肠外营养（home parenteral nutrition, PN）培训的实践经验。
方法：本研究为横断面描述性研究，研究对象为2014年7月至2017年1月期间，巴西南里奥格兰德州阿雷格里港临床医院肠道康复项目的患者家属。纳入标准为：年龄介于30天至17岁的儿童的家属，且预计需使用肠外营养≥8周；同时家属具备照护患儿的主观意愿。本次培训内容涵盖：手卫生与消毒操作、输液泵使用规范、中心静脉导管（central venous catheter, CVC）及家庭肠外营养的护理要点。本研究评估的结局指标包括：导管相关血流感染（catheter-related bloodstream infection, CRBSI）发生率、中心静脉导管意外脱出、肠外营养输注实际时长与预设时长偏差超过60分钟（提前或延迟）、导管机械性堵塞、导管穿刺部位出血及患者死亡情况。
结果：共计为17名患儿的27名家属完成培训。家属的中位年龄为28岁（范围18~60岁），其中63%为患儿母亲。导管相关血流感染发生率均值为1.7例/1000个导管使用日，29.4%的患者至少发生1次中心静脉导管意外脱出事件。本研究未观察到与肠外营养输注相关的并发症、穿刺部位出血或死亡病例。
结论：对家属照护者开展的系统化培训可实现家庭肠外营养的安全实施，同时充分调动家属的主动参与，使得该诊疗操作在巴西公共卫生系统中具备推广可行性。