Simulation-Based Caregiving Skills Training for Family Members of High Grade Glioma Patients

项目摘要/摘要 与其他癌症患者相比，脑瘤患者会经历更多令人衰弱的后遗症，因此， 通常在病程早期依赖其家庭成员的护理和支持。在照看孩子的时候- 相关活动总体上是繁重的，脑瘤患者的家属照顾者面临着与 患者认知功能下降，神经和运动障碍，以及由于疾病过程而导致的人格改变 和治疗。随着典型的疾病快速发展和随后的患者功能下降，照顾者 越来越多地帮助患者进行日常生活活动(如洗澡、喂食、穿衣)以及协调 护理、症状和用药管理以及决策。从本质上讲，照顾者提供基本的 没有技能培训的护理。此外，尽管有明显的证据表明照顾者的痛苦和负担很高， 这可能会影响他们照顾病人的能力，照顾者报告说，他们的支持需求通常是 无人看管的多学科肿瘤学团队。事实上，神经肿瘤学文献普遍缺乏 针对这一弱势群体的循证支持性护理干预。要解决这些关键知识 针对这一独特的需求，我们建议对一种新颖的基于模拟的护理技能干预方法进行中试 看护人。考虑到癌症患者家庭在痛苦中的相互依赖和生活质量，我们预计 这种以照顾者为中心的干预不仅将改善照顾者，还将改善患者的预后。使用 随机对照试验(RCT)设计，患者-照顾者二人组将随机接受干预或 等待列表控制(WLC)ARM。干预内容将通过三种模式提供：教育材料(即， 工作簿和视频)、两个基于模拟的照看技能培训课程和两个心理教育 会议讨论如何应对与照料相关的角色变化。四个人工会议将是护士- 以需求评估为导向，根据家庭现状的需要进行指导和量身定制。病人 照顾者将在基线(随机化之前)以及6周和12周后完成自我报告测量。 我们将评估患者和护理者的心理症状、护理者的疗效和角色调整，以及 患者癌症相关症状作为干预结果。因为照顾者的心理痛苦是 随着可预防医疗保健利用率的增加，我们将抽象急诊科就诊， 入院，以及从患者的医疗记录中进行计划外的肿瘤医生访问。我们将把定性的 说明护理者使用多模式干预组件的经验。有关的可行性数据 同意、保留、遵守和计划评估将被记录下来。建议的工作将提供丰富的 试点数据将为后续更大规模的试验提供信息，以进行这一创新干预寻求的正式疗效测试 以改善这一脆弱但未得到充分研究的患者护理人员群体中与癌症相关的负担。

PROJECT SUMMARY/ABSTRACT Patients with brain tumors experience more debilitating sequelae compared to other cancer patients and thus, often dependent on their family members for care and support early on in the disease course. While caregiving- related activities are taxing in general, family caregivers of brain tumor patients face unique challenges related to patient cognitive decline, neurological and motor deficits, and personality changes due to the disease process and treatment. With the typical rapid disease progression and subsequent patient functional decline, caregivers increasingly assist patients with activities of daily living (e.g., bathing, feeding, dressing) as well as coordination of care, symptom and medication management, and decision-making. Essentially, caregivers provide basic nursing care without skill-based training. Moreover, despite clear evidence of high caregiver distress and burden, which may impact their ability to care for the patient, caregivers report that their support needs are often unattended to by multi-disciplinary oncology teams. In fact, the neuro-oncology literature generally lacks evidence-based supportive care interventions for this vulnerable population. To address these critical knowledge gaps, we propose to pilot-test a novel simulation-based caregiving skills intervention to target the unique needs of caregivers. Given interdependence in distress and quality of life in families coping with cancer, we expect that this caregiver-focused intervention will improve not only caregiver but also patient outcomes. Using a randomized controlled trial (RCT) design, patient-caregiver dyads will be randomized to the intervention or a waitlist control (WLC) arm. The intervention content will be delivered via three modes: education materials (i.e., workbook and video), two simulation-based caregiving skills training sessions, and two psychoeducation sessions addressing coping with caregiving-related role changes. The four manualized sessions will be nurse- led and tailored to the needs of the family’s current situation using a needs assessment driven approach. Patients and caregivers will complete self-report measures at baseline (prior to randomization) and 6 and 12 weeks later. We will assess patient and caregiver psychological symptoms, caregiver efficacy and role adjustment, and patient cancer-related symptoms as intervention outcomes. Because psychological distress in caregivers is associated with increased preventable healthcare utilization, we will abstract emergency department visits, hospital admissions, and unplanned oncologist visits from patients’ medical records. We will integrate qualitative accounts of the caregivers’ experiences with the multi-model intervention components. Feasibility data regarding consent, retention, adherence, and program evaluation will be recorded. The proposed work will provide rich pilot data that will inform a subsequent larger trial for formal efficacy testing of this innovative intervention seeking to improve cancer-related burden in this vulnerable yet understudied patient-caregiver population.