Refining and testing the electronic Social Network Assessment Program (eSNAP)

完善和测试电子社交网络评估计划（eSNAP）

• 批准号: 9018666
• 负责人: Maija Reblin
• 金额: $ 9.5万
• 依托单位: H. LEE MOFFITT CANCER CTR & RES INST
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-01-07 至 2017-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9018666
• 关键词: Acquaintances; Address; Affect; Brain; Brain Neoplasms; Buffers; Cancer Family; Caregiver Burden; Caregiver support; Caregivers; Caring; Cataloging; Catalogs; Characteristics; Clinic; Clinical; Cognitive; Collaborations; Communication; Data; Disease Progression; Effectiveness; Electronic Health Record; Electronics; Emotional; Evaluation; Face; Family; Family Caregiver; Foundations; Friends; Health; Health Personnel; Healthcare Systems; Home environment; Imagery; Impaired cognition; Institute of Medicine (U.S.); Intervention; Knowledge; Lead; Life Stress; Mediator of activation protein; Mental Health; Modeling; Monitor; Outcome; Patient Care; Patients; Personal Satisfaction; Personality; Population; Problem Solving; Process; Public Health; Quality of life; Recommendation; Research; Research Personnel; Resources; Risk; Role; Services; Social Network; Social Work; Social support; Source; Stress; Technology; Testing; Uncertainty; Work; base; behavior change; care giving burden; caregiving; cognitive capacity; computer design; coping; cost effective; design; electronic data; experience; family caregiving; health care model; high risk; improved; informal caregiving; information processing; meetings; neuro-oncology; patient population; physical conditioning; prevent; programs; prototype; psychologic; public health relevance; satisfaction; social; support network; tool; usability; user-friendly; willingness

 DESCRIPTION (provided by applicant): The impact of caregiving burden on the health and well-being of family caregivers (FCGs) is increasingly recognized as an important public health issue. While all FCGs face challenges, those caring for patients with brain tumors are at a considerable risk for burden due to notable patient characteristics: rapid disease progression, significant physical/cognitive debilitation, and personality and behavior changes. FCGs who have adequate support from their social networks (including friends, family, and acquaintances) experience less burden and better health. However, many FCGs underestimate the willingness of others to help and cut themselves off from support networks to focus on caregiving tasks. Health care providers (HCPs) have been urged to help FCGs engage their social networks to provide support, but have no user-friendly clinical tools to facilitate discussions. We propose to meet this need through an electronic Social Network Assessment Program (eSNAP) to automate the efficient capture and visualization of FCG social network data. The aims of this proposal are to: 1. Refine eSNAP data-gathering and visualization prototypes based on evaluations of user experience, and 2. Test the feasibility of implementing eSNAP in a neuro-oncology clinical setting. We will achieve Aim 1 by conducting usability testing in a simulated clinical setting with former neuro-oncology FCGs to refine the eSNAP prototype. We will achieve Aim 2 by piloting the final version of eSNAP in a neuro-oncology clinic with current FCGs and collecting preliminary effectiveness data on FCG outcomes (FCG quality of life and stress) and mediators (FCG social support utilization and burden). Support network resource visualization using eSNAP works in two ways to improve FCG outcomes. First, eSNAP helps FCGs to organize their social resources and the visualization helps to remind them of these available sources of support. Second, eSNAP can facilitate more efficient FCG-HCP communication. HCPs can easily identify FCG needs within the eSNAP visualization and target these needs through problem-solving or referral to formal services. Consistent with the buffering hypothesis and the stress process model, the support facilitated by eSNAP can reduce FCG stress, improving FCG stress and quality of life outcomes. eSNAP is an intuitive, user-friendly social network visualization tool designed for clinical use. It is easily scalable for application to broaer cancer FCG or patient populations. eSNAP also provides a means to meet Institute of Medicine recommendations to include social connectedness data in electronic health records. This pilot will provide the foundation for a larger trial of eSNAP to test its impact on a larger group of cancer FCG quality of life, utilization of social support resources, and quality of communication with HCPs.

 描述（由申请人提供）：负担对家庭照顾者（FCG）的健康和福祉的影响越来越被认为是一个重要的公共卫生问题。虽然所有FCG都面临挑战，但由于患者的显著特征，那些照顾脑肿瘤患者的人面临着相当大的负担风险：疾病进展迅速，显著的身体/认知衰弱以及个性和行为变化。从他们的社交网络（包括朋友、家人和熟人）获得足够支持的FCG经历了更少的负担和更好的健康。然而，许多FCG低估了其他人的帮助意愿，并切断了自己的支持网络，专注于完成任务。已敦促卫生保健提供者（HCP）帮助FCG利用其社交网络提供支持，但没有用户友好的临床工具来促进讨论。我们建议通过电子社交网络评估程序（eSNAP）来满足这一需求，以自动高效地捕获和可视化FCG社交网络数据。本提案的目的是：1.根据用户体验评估，完善eSNAP数据收集和可视化原型; 2.测试在神经肿瘤临床环境中实施eSNAP的可行性。我们将通过在模拟临床环境中使用前神经肿瘤学FCG进行可用性测试来完善eSNAP原型，从而实现目标1。我们将通过在神经肿瘤诊所使用当前的FCG试行eSNAP的最终版本，并收集有关FCG结局（FCG生活质量和压力）和介导因素（FCG社会支持利用和负担）的初步有效性数据来实现目标2。使用eSNAP支持网络资源可视化以两种方式改善FCG结果。首先，eSNAP帮助FCG组织他们的社交资源，可视化有助于提醒他们这些可用的支持来源。其次，eSNAP可以促进更有效的FCG-HCP通信。HCP可以在eSNAP可视化中轻松识别FCG需求，并通过解决问题或转介到正式服务来定位这些需求。与缓冲假设和压力过程模型一致，eSNAP促进的支持可以减轻FCG压力，改善FCG压力和生活质量结果。eSNAP是一款直观、用户友好的社交网络可视化工具，专为临床使用而设计。它很容易扩展应用于更广泛的癌症FCG或患者群体。eSNAP还提供了一种方法，以满足医学研究所的建议，将社会联系数据纳入电子健康记录。该试点将为更大规模的eSNAP试验提供基础，以测试其对更大范围的癌症FCG生活质量、社会支持资源利用率以及与HCP沟通质量的影响。