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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：
10509910
负责人：
Kathrin Milbury
金额：
$ 20.29万
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/10509910
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 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 Measures Mediator of activation protein Medical Care Team Medication Management Mental Health Modeling Needs Assessment Neurologic Deficit Nurses Oncologist Oncology Outcome Patient Care Patient Self-Report Patient Simulation 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 base 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 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.

项目总结/文摘