Department of Health Outcomes & Behavior, Moffitt Cancer Center, 12902 Magnolia Dr, Tampa, FL, 33612, USA.
Department of Biostatistics and Bioinformatics, Moffitt Cancer Center, Tampa, FL, USA.
BMC Health Serv Res. 2021 Apr 17;21(1):360. doi: 10.1186/s12913-021-06372-w.
Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support.
We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization.
This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research.
clinicaltrials.gov , Registration number: NCT04268979 ; Date of registration: February 10, 2020, retrospectively registered.
在癌症医疗体系中，非正式家庭护理人员构成了一个重要且需求日益增长的角色。对于原发性恶性脑肿瘤患者的护理人员来说更是如此，因为这类患者的疾病进展迅速，包括身体和认知能力的衰退。非正式的社会网络资源，如朋友和家人，可以为护理人员提供社会支持，从而降低护理人员的负担并提高整体生活质量。然而，护理人员在获得所需社会支持方面存在障碍。为了解决这一需求，我们的团队开发并正在评估一种多组分的护理人员支持干预措施，该措施结合了技术和个人联系，以改善护理人员的社会支持。
我们目前正在进行一项前瞻性、纵向 2 组随机对照试验，比较接受干预的护理人员和等待名单对照组的护理人员。只有护理人员直接接受干预，但患者-护理人员二人组被招募，以便我们可以评估两者的结果。为期 8 周的干预措施包括两个部分：（1）电子社交网络评估计划，这是一种基于网络的工具，用于可视化现有社会支持资源并提供额外资源的定制清单；（2）护理人员导航，包括每周与护理人员导航员进行一次电话会议，以解决护理人员的社会支持需求。通过护理人员（基线、4 周、8 周）和癌症患者（基线和 8 周）完成的问卷评估结果。在 8 周时，等待名单条件下的护理人员可以选择加入干预措施。我们的主要结果是护理人员的幸福感；我们还探索了患者的幸福感以及护理人员和患者的医疗保健利用情况。
本方案描述了一项测试新型社会支持干预措施的研究，该干预措施结合了基于网络的社交网络可视化工具和资源清单（eSNAP）与个性化护理人员导航。该干预措施响应了以家庭为中心的护理模式，并呼吁将重点放在非正式护理研究的临床和研究重点上。
clinicaltrials.gov，注册号：NCT04268979；注册日期：2020 年 2 月 10 日，回溯注册。
