A Stepped-care Psychosocial Intervention for Brain Tumor Family Caregivers

项目摘要/摘要 原发恶性脑瘤与家庭照顾者负担的高风险相关，这可能会对 影响照顾者和患者的福祉。照顾者在在家照顾病人方面扮演着重要的角色，但如果 照顾者变得不堪重负，无法照顾病人，病人的医疗保健利用率可能会增加。那里 强有力的证据表明，高质量的社会支持是照顾者幸福感的重要组成部分，但存在障碍 对于接受非正式和正式支持的照料者，对这一群体的干预很少。我们的 目标是通过实施阶段性护理干预来解决照顾者的社会支持差距 支持非正式家庭照顾者(FCGS)。我们使用技术和个人接触的混合方法来 利用非正式的社会支持，并通过基于Web的 电子社交网络评估计划(ESNAP)和照顾者导航器。我们假设，通过 与照顾者进行干预，以满足非正式和正式的支持需求，我们将改善照顾者和 提高患者的健康水平，降低患者的医疗保健利用率。我们的具体目标是：1)确定 ESNAP+Caregiver Navigator支持干预对FCG幸福感的影响 ESNAP+Caregiver Navigator关于患者福祉和医疗保健利用的信息；以及3)确定关键干预措施 组件使用混合方法通知未来的干预实施。为了达到这些目标，我们 将对eSNAP+Caregiver Navigator进行为期8周的前瞻性纵向随机对照试验 干预。这项干预措施针对的是最初被诊断为恶性肿瘤的患者的家庭照顾者 脑癌，但照顾者和患者都将参与这项研究。参赛者将在 患者的第一次治疗计划预约，并随机分配到干预条件或 等待列表控制条件。处于干预状态的照顾者将获得访问eSNAP的权限，eSNAP是一个基于网络的 帮助照顾者对非正式社交网络资源进行分类和可视化的应用程序。ESNAP还提供基本的 资源列表。ESNAP将提醒训练有素的护理员导航员联系缺乏 支持。护理员导航员将与护理员一起解决问题，并在 正在进行电话咨询。护理者导航员的目标是帮助护理者识别和利用非正式的 和正式的支持来源，使照顾者走上成功的支持轨道。调查问卷将是 在登记时和8周内从所有参与者那里收集，恰逢患者就诊。照顾者将 在4周时完成问卷调查，在8周时进行一次简短的汇报访谈。等待名单参与者可以 然后接受干预，并将被要求完成反映干预参与者的问卷。 随访数据将在6个月和1年后收集。拟议的干预措施支持照顾者 在改善福祉和优化卫生保健利用的同时，还提供重要的基础 在研究不足的FCGS和原发恶性脑瘤患者中工作。

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.