ACCESS_Access for Cancer Caregivers to Education and Support for Shared decision-making

癌症护理人员获得教育和支持以共同决策的机会（Access for Cancer Caregivers to Education and Support for Shared Decision Making） 摘要 我们设计了一个实用的随机对照试验，以测试一个干预的人口很少 研究-临终关怀家庭照顾者-针对已确定的需求（决策），并测量核心集 护理人员的结果（焦虑，疼痛知识和患者疼痛）。这一创新的提案将是第一个 临终关怀环境中的共同决策干预。这个项目提出了一个干预临终关怀 癌症护理人员获得教育和支持的机会（Access for Cancer Caregivers to Education and Support for Shared 决策）。我们的初步工作（R 01 NR 011472）发现，使用基于Web的 召开会议，以促进家庭护理人员出席临终关怀计划会议。定性反馈 表明这种出席对家庭成员有益。然而，我们得出结论， 参加这些会议不足以改变临床结果。对于照顾者来说， 改变他们需要为这些遭遇做好准备，并积极与临终关怀工作人员分享 决策的有一个迫切需要武装临终关怀家庭照顾者与必要的信息和 加强他们的情绪状态，使他们成为决策者。我们建议使用Facebook 提供一个平台，以改善情感支持和护理人员的知识，使护理人员更好地为参与做好准备 and decision-making决策.该提案基于一个概念模型，该模型将协作与共享 决策的一项实用的随机对照试验（P-RCT）设计将受试者随机分配到一个 1）第1组为对照组，接受由安宁疗护人员加强的一般安宁疗护 2）第2组是一个干预组，将接受常规护理， 参加私人Facebook支持小组，以增加他们的知识和社会/情感支持，3） 第3组将获得加强的日常护理，参加Facebook支持小组，并参加 临终关怀团队会议与共享决策过程。我们将使用定性和定量 方法平行和平等的地位来衡量干预的效果。我们的总体假设是 ACCESS将改善临终关怀癌症家庭护理人员的知识（通过YouTube视频）和情绪状态 (via Facebook），促进共享决策过程，这将导致改善护理人员的焦虑 和知识，并改善患者的疼痛控制。我们有三个具体目标：1）评估效果 评估ACCESS对临终关怀FCGs焦虑、疼痛知识和患者疼痛的影响; 2）评估社会干预的效果 媒体作为FCG疼痛管理的决策辅助和决策支持; 3）评估 工作人员和FCG对SDM疼痛管理流程的满意度。

ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making) Abstract We have designed a pragmatic randomized controlled trial to test an intervention for a population seldom studied―hospice family caregivers―targeting an identified need (decision-making), and measuring a core set of caregiver outcomes (anxiety, pain knowledge, and patient pain). This innovative proposal will be the first shared decision making intervention in the hospice setting. This project proposes an intervention for hospice family caregivers called ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making). Our preliminary work (R01NR011472) found that it is feasible to use web-based conferencing to facilitate family caregiver attendance at the hospice care plan meetings. Qualitative feedback indicates this attendance is beneficial to family members. However, we conclude that simply enabling attendance at these meetings is not sufficient to change clinical outcomes. For caregivers anxiety to be changed they need to be prepared for these encounters and actively engaged with the hospice staff in shared decision-making. There is a critical need to arm Hospice family caregivers with necessary information and a strengthened their emotional state so they may become decision-makers. We propose using the Facebook platform to improve emotional support and caregiver knowledge to better prepare caregivers for participation and decision-making. The proposal is based on a conceptual model that combines collaboration with shared decision-making. A pragmatic randomized controlled trial (P-RCT) design will randomly assign subjects to one of three groups: 1) Group 1 will serve as the control and receive usual hospice care enhanced by hospice staff training in shared decision making, 2) Group 2 is one intervention group and will receive usual care as well as participate in a private Facebook support group to increase their knowledge and social/emotional support, 3) Group 3 will receive enhanced usual care, participate in the Facebook support group, and participate in hospice team meetings with a shared decision making process. We will use qualitative and quantitative methods in parallel and equal status to measure the efficacy of the intervention. Our overall hypothesis is that ACCESS will improve hospice cancer family caregiver knowledge (via YouTube videos) and emotional state (via Facebook), facilitating a shared decision making process, which will result in improved caregiver anxiety and knowledge and improved pain control for patients. We have three specific aims: 1) Evaluate the effect of ACCESS on hospice FCGs anxiety, pain knowledge, and patient pain; 2) Evaluate the effect of social media as a decision aids and decision support for pain management for FCGs; 3) Evaluate the satisfaction of staff and FCGs with a SDM process for pain management.