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: 10677018
• 负责人: Margaret M Byrne
• 金额: $ 38.04万
• 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/10677018
• 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; Electronics; 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; Persons; Play; Population; Population Intervention; Problem Solving; Psychosocial Assessment and Care; 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; Underserved Population; Visit; Visualization; Waiting Lists; Work; acceptability and feasibility; behavior change; caregiver education; caregiving; coping; design; efficacy evaluation; 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 navigator; patient population; programs; prospective; psychosocial; public health priorities; recruit; service utilization; social organization; support network; therapy design; treatment planning; web app; 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.

项目总结/摘要 原发性恶性脑肿瘤与家庭照顾者负担的高风险相关， 影响护理人员和患者健康。照顾者在照顾家中的病人方面发挥着重要作用，但如果 护理人员变得过于不堪重负而无法护理患者，患者健康护理利用率可能增加。那里 强有力的证据表明，高质量的社会支持是照顾者福祉的重要组成部分，但障碍 目前，这一群体的保健服务只限于接受非正式和正式支助的护理人员，而且很少有针对这一群体的干预。我们 目标是通过实施分级护理干预措施， 支持非正式家庭照顾者。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，并通过基于网络的 电子社交网络评估程序（eSNAP）和护理导航器。我们假设 干预照顾者，以解决非正式和正式的支持需求，我们将改善照顾者， 患者健康和减少患者医疗保健利用。我们的具体目标是：1）确定 eSNAP +护理导航支持干预对FCG健康的有效性; 2）确定 eSNAP +护理人员导航器，用于患者健康和医疗保健利用;以及3）确定关键干预措施 使用混合方法的组成部分，为未来的干预措施实施提供信息。为了实现这些目标，我们 将进行一项为期8周的eSNAP + Caregiver Navigator前瞻性纵向随机对照试验 干预干预的对象是初步诊断为恶性肿瘤的患者的家庭照顾者。 脑癌，但护理人员和患者都将参与这项研究。参加者将在 患者的第一次治疗计划预约，并随机分配到干预条件或 waitlist控制条件。处于干预状态的护理人员将获得eSNAP的访问权限，eSNAP是一个基于网络的 应用程序，以帮助护理人员目录和可视化非正式的社交网络资源。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缺乏以下信息的参与者： 支持.护理人员导航器将与护理人员一起解决问题，并在 正在进行电话咨询。护理者导航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。问卷会 在入组和8周时从所有参与者收集，与患者诊所访视一致。护理人员将 并在第4周完成问卷调查，在第8周进行简短的汇报访谈。候补名单参与者可 然后接受干预，并将被要求完成反映干预参与者的问卷调查。 将在6个月和1年时收集随访数据。拟议的干预措施支持照顾者， 改善福祉和优化卫生保健利用的二元，同时也提供重要的基础 在未充分研究的FCG和原发性恶性脑肿瘤患者中开展研究。

项目成果

Addressing a critical need for caregiver support in neuro-oncology: development of a caregiver navigation intervention using eSNAP social resource visualization.

解决神经肿瘤学中护理人员支持的批判性需求：使用ESNAP社会资源可视化开发护理人员导航干预措施。

• DOI: 10.1007/s00520-022-06977-9
• 发表时间: 2022-06
• 期刊: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
• 作者: Reblin M;Wells KJ;Otto A;McCormick R;Rodriguez L;Walters K;Sutton SK;Zebrack B;Forsyth P;Byrne MM
• 通讯作者: Byrne MM

A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor.

• DOI: 10.1186/s12913-021-06372-w
• 发表时间: 2021-04-17
• 期刊: BMC health services research
• 影响因子: 2.8
• 作者: Reblin M;Ketcher D;McCormick R;Barrios-Monroy V;Sutton SK;Zebrack B;Wells KJ;Sahebjam S;Forsyth P;Byrne MM
• 通讯作者: Byrne MM