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

ACCESS_癌症护理人员获得教育和共同决策支持的机会

• 批准号: 9412445
• 负责人: Debra Parker Oliver
• 金额: $ 61.13万
• 依托单位: UNIVERSITY OF MISSOURI-COLUMBIA
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-01-12 至 2021-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9412445
• 关键词: Address; Adverse effects; Analgesics; Anxiety; Cancer Family; Cancer Patient; Caregiver support; Caregivers; Caring; Clinical; Collaborations; Communication; Communities; Data; Decision Aid; Decision Making; Depressed mood; Distress; Education; Effectiveness of Interventions; Emotional; Family; Family Caregiver; Family member; Feedback; Frequencies; HELLS gene; Health; Health Personnel; Healthcare; Hospice Care; Individual; Institute of Medicine (U.S.); Internet; Intervention; Knowledge; Malignant Neoplasms; Measures; Medical Care Team; Medicare; Methods; Mission; Modeling; Narcotics; Online Systems; Outcome; Pain; Pain management; Participant; Patients; Pharmaceutical Preparations; Population; Privatization; Process; Provider; Proxy; Randomized; Randomized Controlled Trials; Recommendation; Reporting; Research; Structure; Support Groups; Technology; Testing; Time; Training; Training Support; Treatment Efficacy; Work; anxious; arm; base; cancer pain; caregiving; design; end of life; end of life care; experience; group intervention; hospice environment; improved; innovation; loved ones; meetings; satisfaction; shared decision making; social; social media; symposium; treatment as usual; trial design

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.

访问癌症护理人员的教育和支持共同决策） 抽象的 我们设计了一项务实的随机对照试验，以测试人群的干预措施很少 研究了涉及确定需求的家庭护理人员（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）将是第一个。 在临终关怀中的共同决策间隔。 家庭护理人员叫访问 决策）。 会议促进家庭护理人员参加临终关怀计划 表明这一出席对家庭成员有益。 参加会议不足以改变电影的焦虑。 改变了为这些遭遇做准备的需求，并积极与霍斯匹斯员工互动 决策。 力量他们的情绪状态，使他们成为决策者。 改善情感支持和照顾者知识以更好地为护理人员准备参与的平台 和决策。 决策。 在三个组中：1）第1组将作为控制，并接受临终关怀人员的平常临终关怀护理护理 共享决策中的培训，2）第2组是一种介入，会照顾照顾 参加一个私人Facebook支持小组，以增加他们的知识和社交/情感支持，3） 第3组将获得增强的常规护理，参加Facebook支持小组并参加 临终关怀团队会议与共同的决策过程。 并行和平等地位的方法来衡量干预的功效。 访问将改善临终关怀（通过YouTube视频）和情绪状态 （通过Facebook），促进共同的决策过程，这将导致护理人员焦虑的改善 知识和改善患者的疼痛控制。 临终关怀FCG焦虑，疼痛知识和患者疼痛的访问； 2 媒体作为对FCG疼痛管理的艾滋病和决定 具有疼痛管理的SDM流程的员工和FCG的满足。