Effects of Digital Stories Intervention on Psychosocial Well-being for Cancer Patients and Caregivers undergoing Hematopoietic Stem Cell Transplantation (HCT)

项目总结/摘要 接受造血干细胞移植（HCT）的患者和护理人员面临以下风险： 由于移植的严格性和独特性，心理和社会福祉降低 经验，如长期免疫抑制和多种HCT后并发症，导致频繁的 住院治疗然而，很少有研究评估干预措施，以减轻心理困扰， 患者和护理人员，这些都产生了不确定的结果。叙事（Storytelling） 可能是HCT患者和照顾者应对心理社会困扰的有效干预工具。我们 初步数据显示，个人分享的故事中，一系列的情感表达或 决议被描述，可能对情绪健康有有益的影响。在最近的一项3- 一天的数字讲故事工作坊，我们制作了一系列的数字视频与叙述从一个小组后， HCT患者我们建议使用这些数字故事（DS），供HCT查看和讨论 病人/照顾者的二人组，作为一种治疗干预，并检查对他们的心理社会状态的影响。 这种具有成本效益、非侵入性和易于提供的心理社会支持工具从未正式投入使用。 作为HCT患者或患者-护理者二人组的干预进行测试。 为了建立在我们的初步研究和试点测试的疗效，这一系列的DS，110名成人患者， 在亚利桑那州马约诊所接受HCT的受试者及其各自的成人护理人员（共220名受试者）将 随机分配至（a）使用DS（4个5分钟模块的二元暴露）的干预或（B） 信息控制（IC）视频组（对仅包含关于后 HCT护理），然后鼓励作为一对儿进行讨论。每周暴露一次，持续4周 通过一个安全的基于网络的数据收集平台（REDcap），每周通过电子邮件通知和电话提醒 电话使用我们的社会情绪幸福感的叙事效应模型，我们还将研究预期的 调解因素，以确定如何故事可能"工作"，以减少心理困扰，通过培养情感 情绪的处理、接受和双向表露。

Project Summary/Abstract Patients and caregivers undergoing hematopoietic stem cell transplantation (HCT) are at particular risk for reduced psychological and social well-being due to the rigorous and unique nature of the transplant experience, such as prolonged immunosuppression and multiple post HCT complications resulting in frequent hospitalizations. However, few studies have evaluated interventions to alleviate psychosocial distress for both patients and caregivers, and those have yielded inconclusive results. A narrative-based (storytelling) approach may be an effective intervention tool for HCT patients and caregivers coping with psychosocial distress. Our preliminary data show that stories shared by individuals in which a range of emotional expression or resolutions are described, may have beneficial effects on emotional well-being. In a recent pilot study of a 3- day digital storytelling workshop, we produced a series of digital videos with narratives from a panel of post- HCT patients. We propose to use these digital stories (DS), to be viewed and discussed by HCT patient/caregiver dyads, as a therapeutic intervention and to examine influences on their psychosocial status. This cost-effective, non-invasive, and easy-to-deliver psychosocial support vehicle has never been formally tested as an intervention for HCT patients or patient-caregiver dyads. To build upon our preliminary studies and to pilot test the efficacy of this series of DS, 110 adult patients undergoing HCT at the Mayo Clinic Arizona and their respective adult caregivers (N=220 total participants) will be randomized to either (a) an intervention using DS (dyadic exposure to four 5-minute modules) or (b) an information control (IC) video group (dyadic exposure to four videos containing only information about post- HCT care) followed by encouragement to discuss as a dyad. Exposure will occur once per week over 4 weeks via a secure web-based data collection platform (REDcap) with a weekly email notification and reminder phone call. Using our model of Narrative Effects on Socio-Emotional Well-Being, we will also examine expected mediating factors to determine how stories may "work" to reduce psychosocial distress by fostering emotional processing, acceptance, and dyadic disclosure of emotions.