A Stepped-care Psychosocial Intervention for Brain Tumor Family Caregivers

针对脑肿瘤家庭护理人员的阶梯式护理心理社会干预

• 批准号: 10199965
• 负责人: Margaret M Byrne
• 金额: $ 39.35万
• 依托单位: H. LEE MOFFITT CANCER CTR & RES INST
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-07-01 至 2024-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10199965
• 关键词: Acquaintances; Address; Affect; Appointment; Attention; Brain Neoplasms; Cancer Center; Caregiver Burden; Caregiver support; Caregiver well-being; Caregivers; Caring; Catalogs; Clinic Visits; Consultations; Data; Diagnosis; Disease; Disease Progression; Distress; Dose; Effectiveness of Interventions; Enrollment; Face; Family; Family Caregiver; Feedback; Feeling; Foundations; Friends; Funding; Future; Goals; Health; Healthcare Systems; Home; Hospital Costs; Hospitalization; Impaired cognition; Intervention; Interview; Knowledge; Literature; Malignant - descriptor; Malignant Neoplasms; Malignant neoplasm of brain; Methods; Modeling; National Cancer Institute; Online Systems; Outcome; Outpatients; Participant; Patient Care; Patient Participation; Patients; Personal Satisfaction; Personality; Play; Population; Population Intervention; Problem Solving; Psychosocial Assessment and Care; Public Health; Quality of life; Questionnaires; Randomized; Randomized Controlled Trials; Reporting; Research; Resources; Role; Services; Social Network; Social Work; Social support; Source; Technology; Telephone; Testing; Training; Underrepresented Populations; Visit; Visualization; Waiting Lists; Work; acceptability and feasibility; base; behavior change; caregiver education; caregiving; design; efficacy testing; experience; follow-up; health care service utilization; high risk; implementation intervention; improved; informal caregiving; informal support; intervention effect; intervention participants; mortality; navigator intervention; outreach; patient oriented; patient population; programs; prospective; psychosocial; recruit; service utilization; support network; therapy design; treatment planning; web-based tool

PROJECT SUMMARY/ABSTRACT Primary malignant brain tumor is associated with a high risk of family caregiver burden, which can negatively impact caregiver and patient well-being. Caregivers play an important role in caring for patients at home, but if caregivers become too overwhelmed to care for the patient, patient health care utilization can increase. There is strong evidence that high quality social support is a vital component to caregiver well-being, but barriers exist to caregivers receiving informal and formal support and few interventions for this population. Our objective is to address the caregiver social support gap by implementing a stepped-care intervention to support informal family caregivers (FCGs). We use a blended approach of technology and personal contact to leverage informal social support and connect caregivers to formal support services with the web-based electronic Social Network Assessment Program (eSNAP) and a Caregiver Navigator. We hypothesize that by intervening with the caregiver to address informal and formal support needs, we will improve caregiver and patient well-being and reduce patient health care utilization. Our Specific Aims are to: 1) Determine the efficacy of eSNAP + Caregiver Navigator support intervention on FCG well-being; 2) Determine the efficacy of eSNAP + Caregiver Navigator on patient well-being and health care utilization; and 3) Identify key intervention components using mixed methods to inform future intervention implementation. To achieve these aims, we will conduct a prospective, longitudinal randomized controlled trial of the 8-week eSNAP + Caregiver Navigator intervention. The intervention is targeted to family caregivers of patients with a primary diagnosis of malignant brain cancer, but both caregivers and patients will participate in the study. Participants will be recruited at the patient's first treatment planning appointment and randomly assigned to either the intervention condition or to a waitlist control condition. Caregivers in the intervention condition will receive access to eSNAP, a web-based app to help caregivers catalogue and visualize informal social network resources. eSNAP also provides a basic resource list. eSNAP will alert a trained Caregiver Navigator to contact participants who demonstrate a lack of support. The Caregiver Navigator will problem-solve with caregivers and make arrangements/referrals in ongoing phone consultations. The Caregiver Navigator's goal is to help caregivers identify and utilize informal and formal sources of support to place caregivers on a successful trajectory of support. Questionnaires will be collected from all participants at enrollment and 8 weeks, coinciding with patient clinic visits. Caregivers will also complete questionnaires at 4 weeks and a short debriefing interview at 8 weeks. Waitlist participants may then receive the intervention and will be asked to complete questionnaires mirroring intervention participants. Follow-up data will be collected at 6 months and 1 year. The proposed intervention supports caregivers to improve well-being and optimize health care utilization in the dyad, while also providing important foundational work in understudied FCGs and patients with primary malignant brain tumor.

项目摘要/摘要 原发性恶性脑肿瘤与家庭护理人员负担的高风险有关，这可能会负面 影响护理人员和患者福祉。护理人员在照顾家里的患者中发挥着重要作用，但如果 护理人员变得过于不知所措，无法照顾患者，患者医疗保健利用可能会增加。那里 有力的证据表明，高质量的社会支持是照顾者福祉的重要组成部分，但障碍 存在于接受非正式和正式支持的护理人员，对此人群的干预措施很少。我们的 目的是通过实施阶梯护理干预措施来解决护理人员的社会支持差距 支持非正式家庭护理人员（FCGS）。我们使用技术和个人接触的混合方法 利用非正式的社会支持并将护理人员与基于Web的正式支持服务联系起来 电子社交网络评估计划（ESNAP）和护理人员导航员。我们通过 干预照顾者以满足非正式和正式的支持需求，我们将改善照顾者，并 患者福祉并降低患者医疗保健利用。我们的具体目的是：1）确定 ESNAP + Caregiver Navigator的功效支持FCG健康的干预； 2）确定功效 ESNAP +护理人员导航员关于患者福祉和医疗保健利用； 3）确定关键干预 使用混合方法的组件来告知将来的干预实施。为了实现这些目标，我们 将进行为期8周的ESNAP +护理人员导航器的前瞻​​性，纵向随机对照试验 干涉。干预措施针对主要诊断恶性肿瘤的患者的家庭护理人员 脑癌，但护理人员和患者都将参加这项研究。参与者将在 患者的第一次治疗计划预约，并随机分配给干预条件或 候补列表控制条件。干预条件下的护理人员将获得基于网络的ESNAP访问权限 应用程序来帮助看护人分类并可视化非正式的社交网络资源。 ESNAP还提供了基本 资源列表。 ESNAP将提醒受过训练的护理人员导航员，以与参与者联系，这些参与者表明缺乏 支持。护理人员导航员将与护理人员解决问题，并在 正在进行的电话咨询。护理人员导航员的目标是帮助看护人识别和利用非正式 以及正式的支持来源，以使护理人员成功地支持支持。问卷将是 从所有参与者的入学人数和8周的参与者中收集，与患者诊所访问一致。照顾者会 还要在4周完成问卷调查，并在8周时进行了简短的汇报采访。候补名单参与者可以 然后接受干预措施，并将被要求完成镜像干预参与者的问卷。 随访数据将在6个月零1年收集。拟议的干预措施支持护理人员 改善二元组中的福祉并优化医疗保健利用，同时还提供重要的基础 在负FCG和原发性恶性脑肿瘤的患者中工作。