Pediatric Gastroenterology and Nutrition, Medical College of Wisconsin, Milwaukee, Wisconsin.
Department of Nursing Research, Children's Hospital of Wisconsin, Milwaukee, Wisconsin.
Res Nurs Health. 2020 Apr;43(2):145-154. doi: 10.1002/nur.22010. Epub 2020 Jan 27.
Solid-organ transplantation is the treatment of choice for end-stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child's medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self-Management Theory and focuses on family self-management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family-nurse communication and family self-management behaviors for family members of pediatric transplant recipients.
实体器官移植是治疗终末期器官衰竭的首选方法。报告对出院准备不足的儿科移植受者的父母在应对和管理其子女在家中复杂的医疗护理方面有更多困难。在本文中，我们描述了移动健康干预措施(myFAMI)的试点研究方案。myFAMI 干预措施基于个人和家庭自我管理理论，侧重于儿科移植受者在家中的家庭自我管理。试点研究的目的是通过随机对照试验，测试 myFAMI 干预措施对儿科移植受者家属的可行性，并测试出院后应对的初步疗效。该样本将包括来自美国三个儿科移植中心的 40 个家庭单位，每个研究组 20 个。这项研究的结果可能会通过提供使用移动健康来促进患者/家庭-护士沟通和儿科移植受者家属的家庭自我管理行为的见解，从而推动护理科学的发展。
