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mHealth Family Self-management Intervention for Parents of Transplanted Children

针对移植儿童父母的 mHealth 家庭自我管理干预

基本信息

批准号：
9906955
负责人：
Stacee M Lerret
金额：
$ 12.38万
依托单位：
MEDICAL COLLEGE OF WISCONSIN
依托单位国家：
美国
项目类别：
财政年份：
2018
资助国家：
美国
起止时间：
2018-05-23 至 2021-04-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9906955
关键词：
Address Adult Behavior Caring Cellular Phone Child Childhood Chronic Chronic Disease Communication Complex Diarrhea Distal Early identification Family Family Nursing Family member Fathers Fever Foundations Goals Health Health Care Costs Health Services Accessibility Health Status Health Technology Healthcare Home environment Hospital Costs Hospitalization Hospitals Hour Impact evaluation Improve Access Individual Institute of Medicine (U.S.)Institution Interactive Communication Intervention Interview Lead Literature Measures Medical Medication Management Mobile Health Application Monitor Mothers Multicenter Studies Notification Nurses Organ Transplantation Outcome Pain Parents Participant Patients Pharmaceutical Preparations Population Positioning Attribute Process Provider Quality of life Randomized Controlled Trials Readiness Regimen Reporting Research Research Personnel Resources Science Scientist Self Management Solid Symptoms Technology Testing Text Messaging Time Training Programs Transplant Nursing Transplant Recipients Transplantation Vomiting base care costs career coping cost end-stage organ failure family management follow-up grandparent handheld mobile device hospital readmission improved innovation mHealth medication administration novel primary outcome readmission rates recruit response secondary outcome smartphone Application standard care theories transplant centers treatment choice trial design

项目摘要

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.

抽象的实体器官移植已成为许多严重疾病的首选治疗方法否则会导致终末期器官衰竭。 2016年，美国有近2000名儿童接受了移植手术，移植住院费用平均为 40 万美元。在我们之前对实体器官的研究中移植家庭、报告称缺乏出院准备的父母随后报告应对、管理复杂的家庭持续护理变得更加困难，家庭生活质量下降。当父母无法吸收管理孩子的复杂护理所需的详细信息时问题，孩子经常需要重新入院，进一步增加医疗费用。我们提议写一本小说利用移动医疗技术为个人量身定制以家庭为中心的自我管理干预措施（移动医疗）以改善获得护理的机会和出院后的结果。以个人和家庭自我为指导管理理论，本研究将评估 mHealth 家庭自我管理干预措施 (myFAMI)，该干预措施包含家庭和移植之间的个性化日常出院后互动交流通过移动智能手机技术的护士。 myFAMI 追踪日常家庭应对、家庭自我管理在家进行复杂护理的行为（难以管理药物管理和医疗随访方案），以及家长对孩子移植症状（发烧、疼痛、呕吐、腹泻、其他疾病）的管理前 30 天。家庭成员对九个日常问题中每一个的回答可能会导致预识别触发因素并立即通知移植护士。通知将显示家庭成员的反应，以告知移植护士与家长就潜在可能性进行的对话问题，以减轻并发症。这项多中心研究将招募 40 个家庭单位，其中包括来自两个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，将 myFAMI (n = 20) 与标准出院后随访进行比较向上护理 (n = 20)。本研究旨在确定家庭使用 myFAMI（移植护士）的可行性反应以及 myFAMI 的功效，特别是改善获得护理和出院后 30 天的机会结果。我们假设接受 myFAMI 的家庭会报告出院后的应对方式有所改善，药物管理和医疗随访的家庭自我管理行为、家庭管理儿童移植症状、减少医疗资源的使用并改善家庭生活质量。这基于理论的研究具有创新性，整合了移动医疗技术来评估和监测家庭的日常应对方式出院过渡过程中的家庭自我管理行为。该培训计划奠定了基金会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中心和其他复杂的儿科慢性病人群，并使我成为一名慢性病家庭自我管理的独立调查员和首席护士科学家。

项目成果

期刊论文数量（4）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Feasibility and Acceptability of a mHealth Self-Management Intervention for Pediatric Transplant Families.

儿科移植家庭移动医疗自我管理干预的可行性和可接受性。

DOI：
10.1177/01939459211024656
发表时间：
2022-10
期刊：
Western journal of nursing research
影响因子：
1.8
作者：
Lerret SM;Schiffman R;White-Traut R;Medoff-Cooper B;Ahamed SI;Adib R;Liegl M;Alonso E;Mavis A;Jensen K;Peterson CG;Neighbors K;Riordan MK;Semp MC;Vo T;Stendahl G;Chapman S;Unteutsch R;Simpson P
通讯作者：
Simpson P

Acceptability of an mHealth Family Self-management Intervention (myFAMI) for Pediatric Transplantation Families: Qualitative Focus.

DOI：
10.2196/39263
发表时间：
2022-07-15
期刊：
JMIR nursing
影响因子：
0
作者：
Lerret, Stacee Marie;Flynn, Erin;White-Traut, Rosemary;Alonso, Estella;Mavis, Alisha M;Jensen, M Kyle;Peterson, Caitlin G;Schiffman, Rachel
通讯作者：
Schiffman, Rachel

An mHealth App-Based Self-management Intervention for Family Members of Pediatric Transplant Recipients (myFAMI): Framework Design and Development Study.