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

高级别胶质瘤患者家属的模拟护理技能培训

基本信息

批准号：
10693312
负责人：
Kathrin Milbury
金额：
$ 22.18万
依托单位：
UNIVERSITY OF TX MD ANDERSON CAN CTR
依托单位国家：
美国
项目类别：
财政年份：
2022
资助国家：
美国
起止时间：
2022-09-01 至 2024-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10693312
关键词：
Accident and Emergency department Activities of Daily Living Address Adherence Advanced Malignant Neoplasm Bathing Brain Neoplasms Cancer Patient Care given by nurses Caregivers Caring Clinical Consent Control Groups Coping Skills Data Decision Making Dementia Disease Disease Progression Distress Education Educational Materials Educational process of instructing Emergency department visit Emotional Environment Face Family Family Caregiver Family member Glioma Health Personnel High Prevalence Hospitalization Impaired cognition Intervention Knowledge Literature Malignant Neoplasms Manuals Measures Mediator Medical Care Team Medication Management Mental Health Modeling Needs Assessment Neurologic Deficit Nurses Oncologist Oncology Outcome Patient Care Patient Self-Report Patient-Focused Outcomes Patients Personality Phase Population Primary Brain Neoplasms Procedures Process Program Evaluation Qualitative Methods Quality of Care Quality of life Randomized Randomized, Controlled Trials Reporting Research Role Spinal cord injury Sterile coverings Supportive care Symptoms Taxes Testing Training Translating Treatment Efficacy Visit Vulnerable Populations Waiting Lists Work arm behavior change care coordination caregiving clinical care clinical practice coping design efficacy testing evidence base experience feeding functional decline health care service utilization improved innovation instrumental activity of daily living motor deficit multidisciplinary neuro-oncology novel patient health information pilot test primary outcome psychoeducation psychoeducational psychological distress psychological symptom secondary outcome simulation skills skills training symptom management trial design

项目摘要

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.

项目概要/摘要与其他癌症患者相比，脑肿瘤患者会经历更多令人衰弱的后遗症，因此，在病程早期往往依赖家人的护理和支持。相关活动总体来说很繁重，脑肿瘤患者的家庭护理人员面临着与相关的独特挑战疾病过程导致患者认知能力下降、神经和运动缺陷以及性格改变随着典型的疾病快速进展和随后的患者功能下降，护理人员需要注意。越来越多地协助患者进行日常生活活动（例如洗澡、喂食、穿衣）以及协调本质上，护理人员提供基本的护理、症状和药物管理以及决策。此外，尽管有明显证据表明护理人员的痛苦和负担很高，这可能会影响他们照顾病人的能力，护理人员报告说，他们的支持需求往往是事实上，神经肿瘤学文献普遍缺乏。针对这一弱势群体的基于证据的支持性护理干预措施，以解决这些关键知识。差距，我们建议试点测试一种新颖的基于模拟的护理技能干预措施，以满足独特的需求鉴于应对癌症的家庭的痛苦和生活质量是相互依赖的，我们预计这种以护理人员为中心的干预措施不仅可以改善护理人员，还可以改善患者的治疗效果。随机对照试验 (RCT) 设计中，患者-护理人员二人组将被随机分配到干预组或候补名单控制 (WLC) 部门干预内容将通过三种模式提供：教育材料（即，工作簿和视频）、两次基于模拟的护理技能培训课程以及两次心理教育涉及应对护理相关角色变化的会议这四场手动会议将是护士。使用需求评估驱动的方法，根据家庭当前情况的需求进行引导和定制。护理人员将在基线（随机分组之前）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人员的心理症状、护理人员的效能和角色调整，以及因为护理人员的心理困扰是由患者癌症相关症状作为干预结果。随着可预防医疗保健利用率的增加，我们将减少急诊科就诊，我们将整合患者病历中的入院情况以及计划外的肿瘤科医生就诊。照顾者对多模式干预组件的经验的叙述。同意、保留、遵守和计划评估将被记录下来，提议的工作将提供丰富的内容。试点数据将为后续更大规模的试验提供信息，以对这种创新干预措施进行正式功效测试改善这一弱势但尚未得到充分研究的患者护理人员群体的癌症相关负担。