University of Michigan, School of Public Health, Department of Epidemiology, Ann Arbor, MI, United States.
Michigan State University, College of Communication Arts and Sciences, Department of Media and Information, East Lansing, MI, United States.
JMIR Mhealth Uhealth. 2019 Oct 24;7(10):e15775. doi: 10.2196/15775.
Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver-facing tool to provide informational needs about the health status of patients undergoing inpatient HCT.
This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0).
Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants' homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection.
Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one's own needs with the patient's needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a "menu" of positive activities to help support caregiver health and well-being.
This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.4918.
造血干细胞移植（HCT），也称为血液和骨髓移植（BMT），是一种治疗多种癌症和非癌症疾病的高风险但有潜在治愈作用的疗法。BMT Roadmap（Roadmap 1.0）是一款面向家庭护理人员的移动健康应用程序，旨在满足接受住院 HCT 治疗的患者的健康状况相关信息需求。
本研究探讨了正在接受 HCT 治疗的患者的家属对该应用程序的看法和看法，以及他们对进一步开发技术和将 BMT Roadmap 扩展到门诊环境（称为 Roadmap 2.0）的意见。
对 24 名患者家属进行了半结构化定性访谈。问题是根据现有文献以及在医院环境中的先前深入观察和访谈制定的，旨在探讨研究目标。参与者是在 HCT 患者的常规门诊预约期间招募的，所有访谈均在参与者的家中进行，Roadmap 2.0 旨在在此环境中使用。使用源自我们先前研究的一套一致的代码进行了主题分析。还包括新出现的代码，并且随着编码和数据收集的迭代循环，对编码结构进行了细化。
通过定性分析得出了四个主要主题：（1）平衡护理职责相关的压力；（2）学习和适应新的日常生活规律（韧性）；（3）平衡自己的需求与患者的需求（洞察力）；（4）护理的好处。当进一步询问护理人员对参与积极活动干预的看法时（即，表达感激之情或从事可促进积极的思想，情感和行为的活动等可促进积极情绪和幸福感的愉快活动），他们更喜欢“菜单”来帮助支持护理人员的健康和幸福。
本研究将家庭护理人员作为 Roadmap 2.0 新组件的开发参与者。我们的研究进一步了解了造血干细胞移植家庭护理人员在维持生活平衡的同时所面临的许多优先事项。他们的日程安排通常不可预测，尤其是在患者出院后更是如此。我们的研究结果表明，将 Roadmap 2.0 扩展到门诊环境可能会为护理人员提供关键支持，并且 HCT 护理人员有兴趣并愿意参与可以增强幸福感并减轻与护理相关的压力的积极活动。
国际注册报告标识符（IRRID）：RR2-10.2196/resprot.4918。
