Ufer Lisa Gorman, Moore Julie A, Hawkins Kristen, Gembel Gina, Entwistle David N, Hoffman David
Michigan Public Health Institute, 2501 Jolly Rd. Suite 180, Okemos, MI, 48864, USA.
Region 4 Midwest Genetics Collaborative, Okemos, MI, USA.
Matern Child Health J. 2018 May;22(5):648-659. doi: 10.1007/s10995-018-2477-2.
Introduction This paper describes the care coordination training program and results of an evaluation from its pilot in seven states. Despite the importance of practice-based care coordination, only 42.3% of children with special health care needs (CYSHCN) met all needed components of care coordination as defined by the Maternal Child Health Bureau. Recognizing that children with medically complex conditions often have lower rates of achieving care coordination within a medical home, the Region 4 Midwest Genetics Collaborative worked with families to develop a training to empower families in care coordination. The Care Coordination: Empowering Families(CCEF) training provides families with the knowledge, tools, and resources to engage with health, education and family support systems. This article gives an overview of the training and comprehensive evaluation. Methods Participants were family caregivers of children with genetic conditions and other special health care needs recruited in one of seven pilot states. Evaluation data were collected from 190 participants prior to and immediately following the training. An additional follow-up assessment one full year post training was completed by 80 participants (a response rate of 42%). Results Families who attended the training report being the primary source of care coordination for their children and 83.7% see their role in their child's healthcare changing as a result of the training. The findings suggest that peer support and communication with providers increased as a result of the training over the course of the study. The data suggest that the training impacted how the family interacts with the child's doctor, including initiating conversations to prepare their child for transition to adult health care. Further, families report system-level improvements 1 year later compared to the pre-training assessment. Discussion CCEF training is a promising practice for facilitating medical home use among CYSHCN.
引言 本文介绍了一项护理协调培训计划及其在七个州进行试点的评估结果。尽管基于实践的护理协调很重要，但只有42.3%有特殊医疗保健需求的儿童（CYSHCN）达到了母婴健康局所定义的护理协调的所有必要组成部分。认识到患有复杂医疗状况的儿童在医疗家庭中实现护理协调的比例通常较低，中西部第四地区遗传学协作组织与家庭合作开展了一项培训，以使家庭在护理协调方面更有能力。“护理协调：增强家庭能力”（CCEF）培训为家庭提供了与健康、教育和家庭支持系统互动的知识、工具和资源。本文概述了该培训及全面评估。方法 参与者是在七个试点州之一招募的患有遗传疾病和其他特殊医疗保健需求儿童的家庭照顾者。在培训前和培训后立即从190名参与者那里收集评估数据。80名参与者在培训一年后完成了额外的随访评估（回复率为42%）。结果 参加培训的家庭报告称自己是孩子护理协调的主要来源，83.7%的家庭认为培训使他们在孩子医疗保健中的角色发生了变化。研究结果表明，在研究过程中，培训使同伴支持和与提供者的沟通有所增加。数据表明，培训影响了家庭与孩子医生的互动方式，包括开始对话为孩子向成人医疗保健过渡做准备。此外，与培训前评估相比，家庭报告一年后系统层面有了改善。讨论 CCEF培训是促进CYSHCN使用医疗家庭的一种有前景的做法。
