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

基本信息

批准号：
9804802
负责人：
Maija Reblin
金额：
$ 42.58万
依托单位：
H. LEE MOFFITT CANCER CTR & RES INST
依托单位国家：
美国
项目类别：
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/9804802
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 environment Hospital Costs Hospitalization Imagery 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 Waiting Lists Work base behavior change caregiver education caregiving design efficacy testing experience follow-up health care service utilization high risk 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

项目摘要

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.

项目概要/摘要原发性恶性脑肿瘤与家庭照顾者负担的高风险相关，这可能会对影响护理人员和患者的健康。护理人员在在家照顾患者方面发挥着重要作用，但如果护理人员不堪重负而无法照顾患者，患者的医疗保健利用率可能会提高。那里有强有力的证据表明，高质量的社会支持是护理人员福祉的重要组成部分，但存在障碍照顾者接受非正式和正式的支持，并且很少对该人群进行干预。我们的目标是通过实施阶梯式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照顾者 (FCG)。我们采用技术和个人联系相结合的方法利用非正式的社会支持，并通过基于网络的网络将护理人员与正式的支持服务联系起来电子社交网络评估计划 (eSNAP) 和看护者导航器。我们假设通过通过与照顾者进行干预来解决非正式和正式的支持需求，我们将改善照顾者和患者健康并减少患者医疗保健的利用率。我们的具体目标是： 1) 确定 eSNAP + Caregiver Navigator 支持干预对 FCG 健康的功效； 2) 确定功效 eSNAP + Caregiver Navigator 有关患者福祉和医疗保健利用的信息； 3) 确定关键干预措施使用混合方法的组成部分为未来的干预实施提供信息。为了实现这些目标，我们将进行为期 8 周的 eSNAP + Caregiver Navigator 的前瞻性、纵向随机对照试验干涉。该干预措施针对的是初步诊断为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与该研究。参与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候补名单控制条件。处于干预状态的护理人员将可以访问 eSNAP，这是一个基于网络的应用程序帮助护理人员编目和可视化非正式社交网络资源。 eSNAP 还提供了一个基本的资源列表。 eSNAP 将提醒经过培训的护理人员导航员联系那些表现出缺乏能力的参与者支持。护理人员导航员将与护理人员解决问题并做出安排/转介持续电话咨询。护理人员导航器的目标是帮助护理人员识别和利用非正式的以及正式的支持来源，使护理人员走上成功的支持轨道。调查问卷将在入组时和第 8 周（与患者就诊时同时进行）收集自所有参与者。照顾者会还需在 4 周时完成问卷调查，并在 8 周时进行简短的情况汇报访谈。候补名单参与者可以然后接受干预，并被要求填写反映干预参与者的调查问卷。后续数据将在 6 个月和 1 年收集。拟议的干预措施支持护理人员改善福祉并优化医疗保健利用，同时还提供重要的基础致力于研究 FCG 和原发性恶性脑肿瘤患者。