Utilizing mHealth Technology to Support Caregivers in the Medical Management of their Child with Cancer

儿童癌症的诊断不仅对患者，而且对他们的照顾者来说，都是一件改变人生的事情。一个 儿童癌症的诊断增加了对照顾者的要求，他们经常感到没有能力 处理这些活动，特别是当存在未满足的信息、通信或资源需求时。这可以 导致照顾者经历身体压力、负面情绪、经济负担和不良行为 以及生理上的影响。最终，这会降低照顾者的生活质量，这可能会影响他们的能力 为他们的孩子提供适当的医疗护理。由于照顾者扮演着重要的角色，研究人员 已着手制定支持性干预措施，以减轻照顾者负担并促进 应对和优质护理。Van Houtven等人创建了护理人员干预组织框架，以使 以及专注于肿瘤学研究的高级护理人员。这一框架假定通过干预措施来改善 护理者的临床技能/知识、心理社会(自我效能和应对)能力、支持寻求 (组织和协调)，和/或照顾的数量将为他们和 癌症患者。但到目前为止，大多数以照顾者为重点的干预措施都是针对 完全无视癌症儿童照顾者的独特需求。因此， 以Van Houtven框架为指导，我们建议开发一位专注于儿科肿瘤护理人员 干预。这项干预将以移动健康信息技术(MHealth)的形式提供 工具。移动健康，定义为移动或无线通信技术在健康和 医疗保健，有很大的潜力帮助照顾者导航医疗系统并支持他们在 对子女的医疗管理。护理者相信技术可以帮助他们进行护理 更有效率、更有效、更安全、压力更小。我们的假设是，旨在支持以下功能的mHealth工具 照顾者为患有癌症的孩子提供医疗护理的能力将导致他们的 自我效能感，掌握照看技能/知识，并将减轻压力，这最终会导致 在改善照顾者和以患者为中心的结果方面。这项建议的具体目的是： (1)共同设计和执行mHealth工具的可用性测试，以满足以下医疗管理需求 使用以用户为中心的设计过程的癌症儿童照顾者；和(2)进行随机试验 MHealth工具用于癌症儿童照料者的对照试验，评估a)照料者的可行性 在较长时间内使用，b)实际环境中护理人员对mHealth工具的接受度，c) MHealth工具对照顾者结果的影响，以及d)对患有 癌症。在这项工作之后，我将做好准备，申请R01资金，进行更大规模的 进一步评估以照顾者为中心的mHealth工具对照顾者的影响的随机对照试验 结果，以及患者结果，包括临床结果、生活质量和医疗保健利用。

A diagnosis of cancer in a child is a life-altering event not just for the patient, but also for their caregivers. A child’s diagnosis of cancer multiplies the demands placed on caregivers and they often feel ill equipped to handle these activities, particularly if there are unmet information, communication, or resource needs. This can lead caregivers to experience physical stress, negative emotions, financial burden, and undesirable behavioral and physiological impacts. Ultimately, this can reduce caregivers’ quality of life, which may impact their ability to provide appropriate medical care to their children. Due to the important role caregivers play, researchers have embarked on the development of supportive interventions to alleviate caregiver burden and facilitate coping and quality care. Van Houtven et al created the Caregiver Intervention Organizing Framework to align and advance caregiver focused oncology research. This framework postulates that interventions to improve a caregiver’s clinical skills/knowledge, psychosocial (self-efficacy and coping) competency, support seeking (organizational and coordination), and/or quantity of caregiving will lead to benefits for both them and the patient with cancer. To date though, most caregiver focused interventions have been targeted at caregivers of adults with cancer, completely ignoring the unique needs of caregivers of children with cancer. Therefore, using the Van Houtven framework as a guide, we propose to develop a pediatric oncology caregiver focused intervention. This intervention will be delivered in the form of a mobile health information technology (mHealth) tool. mHealth, defined as the application of mobile or wireless communication technologies to health and healthcare, has great potential to assist caregivers in navigating the healthcare system and support them in the medical management of their children. Caregivers believe that technology can help them to make caregiving more efficient, effective, safer and less stressful. Our hypothesis is that an mHealth tool that aims to support caregivers in their ability to provide medical care to their child with cancer will lead to improvements in their sense of self-efficacy, mastery of caregiving skills/knowledge, and will reduce stress, which will ultimately result in improvement of both caregiver and patient-centered outcomes. The Specific Aims of this proposal are to: (1) Co-design and perform usability testing of an mHealth tool to address the medical management needs of caregivers of children with cancer utilizing a user-centered design process; and (2) Conduct a pilot randomized controlled trial of the mHealth tool for caregivers of children with cancer, assessing a) feasibility of caregiver use over extended period of time, b) acceptability of the mHealth tool by caregivers in a real-world setting, c) impact of the mHealth tool on caregiver outcomes, and d) effect on healthcare utilization of the child with cancer. Following this work, I will be well positioned to apply for R01 funding to conduct a larger-scale randomized controlled trial that further evaluates the impact of the caregiver focused mHealth tool on caregiver outcomes, as well as patient outcomes including clinical outcomes, quality of life, and healthcare utilization.