mHealth Family Self-management Intervention for Parents of Transplanted Children

摘要 实体器官移植已成为许多严重疾病的首选治疗方法，这些疾病可能 否则会导致终末期器官衰竭。2016年，美国有近2000名儿童接受了器官移植， 移植住院的平均费用为40万美元。在我们之前对固体器官的研究中 移植家庭，报告没有做好出院准备的父母随后报告 更难应对、管理复杂的家庭持续护理，并降低家庭生活质量。 当父母不能吸收管理孩子复杂护理所需的详细信息时 在一些问题上，儿童往往需要重新入院，进一步增加了医疗费用。我们提议写一部小说 使用移动医疗技术的以个人定制的家庭为中心的自我管理干预 (MHealth)改善获得护理和出院后结果的机会。以个人和家庭自我为导向 管理理论，本研究将评估移动健康家庭自我管理干预(MyFAMI) 整合了家庭和移植公司之间个性化的出院后日常互动交流 通过移动智能手机技术进行护理。MyFAMI跟踪家庭日常应对、家庭自我管理 家庭复杂护理行为(难以管理用药和医疗随访 治疗方案)，以及父母对儿童移植症状(发烧、疼痛、呕吐、腹泻、其他疾病)的管理 头30天。家庭成员对每天九个问题中的每一个的回答可能会导致预先- 已确定触发并激活对移植护士的即时通知。通知将显示 家庭成员回应，告知移植护士与父母关于潜力的对话 问题，以减少并发症。这项多中心研究将招募40个家庭单位，包括一个 来自两家主要儿科机构的移植受者的主要和次要家庭成员，并将 采用随机对照试验设计，比较MyFAMI(n=20)和标准出院后随访。 向上护理(n=20)。本研究旨在确定移植护士myFAMI在家庭中使用的可行性 反应，以及myFAMI在改善获得护理和出院后30天的有效性方面的具体效果 结果。我们假设，接受MyFAMI的家庭将报告出院后应对方式的改善， 家庭自我管理行为用于药物管理和医疗随访，家庭管理 儿童移植症状、减少医疗资源的使用和提高家庭生活质量。这 基于理论的研究是创新的，整合了移动健康技术来评估和监测日常家庭应对 出院过渡过程中的家庭自我管理行为。这一培训计划为 在一项更大规模的儿科移植多中心研究中开发和测试干预措施的基金会 中心和其他复杂的儿科慢性病人群，以及使我成为一名 慢性疾病家庭自我管理方面的独立调查者和首席护士科学家。

ABSTRACT Solid organ transplant has become the treatment of choice for a number of serious conditions that might otherwise result in end stage organ failure. In 2016, nearly 2,000 children underwent transplant in the US, costing an average of $400,000 for the transplant hospitalization. In our previous research with solid organ transplant families, parents who reported a lack of readiness for hospital discharge subsequently reported more difficulty coping, managing the complex continuing care at home and decreased family quality of life. When parents are unable to assimilate the detailed information required in managing their child's complex care issues, the child often requires hospital readmission, further escalating healthcare costs. We propose a novel individually tailored family centered self-management intervention using mobile healthcare technology (mHealth) to improve access to care and post discharge outcomes. Guided by the Individual and Family Self- Management Theory, this study will evaluate a mHealth Family Self-Management Intervention (myFAMI) that incorporates an individualized daily post-discharge interactive communication between families and Transplant Nurse via mobile smartphone technology. myFAMI tracks daily family coping, family self-management behaviors of complex care at home (difficulty managing medication administration and the medical follow-up regimen), and parent management of child's transplant symptoms (fever, pain, vomiting, diarrhea, other illness) for the first 30-days. The family member response to each of the nine daily questions may result in a pre- identified trigger and activate immediate notification to the Transplant Nurse. The notification will display the family member responses to inform the Transplant Nurse conversation with the parent regarding potential problems in order to mitigate complications. This multicenter study will recruit 40 family units, consisting of a primary and secondary family member of transplant recipients from two major pediatric institutions and will employ a randomized controlled trial design comparing myFAMI (n = 20) with standard post-discharge follow- up care (n = 20). This study aims to determine the feasibility of family use of myFAMI, Transplant Nurse response, and the efficacy of myFAMI specifically to improve access to care and 30-day post-discharge outcomes. We hypothesize that families who receive myFAMI will report improved post-discharge coping, family self-management behaviors for medication management and medical follow-up, family management of child transplant symptoms, decreased use of healthcare resources and improved family quality of life. This theory-based research is innovative integrating mHealth technology to assess and monitor daily family coping and family self-management behaviors during the discharge transition process. This training program lays the foundation to develop and test the intervention in a larger multicenter study amongst pediatric transplant centers and other complex pediatric chronic illness populations, as well as positions me to become an independent investigator and lead nurse scientist in family self-management of chronic conditions.