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Online Narrative Interventions and Family Support for Advanced Cancer Patients

对晚期癌症患者的在线叙事干预和家庭支持

基本信息

批准号：
7759598
负责人：
MARGARET E WISE
金额：
$ 22.87万
依托单位：
UNIVERSITY OF WISCONSIN-MADISON
依托单位国家：
美国
项目类别：
财政年份：
2009
资助国家：
美国
起止时间：
2009-02-01 至 2012-01-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7759598
关键词：
Address Adult Advanced Malignant Neoplasm Age Cancer Patient Caregivers Cessation of life Child Communication Communities Compassion Comprehensive Cancer Center Computers Control Groups Distress Early treatment Education Educational Materials Elderly Exploratory/Developmental Grant Family Family member Focus Groups Friends Fruit Goals Growth Health Home environment Individual Internet Intervention Interview Knowledge Learning Life Link Malignant Neoplasms Manuscripts Mediating Mediator of activation protein Medical Minority Nature Needs Assessment Online Systems Outcome Pain Participant Patients Personal Satisfaction Physicians Population Population Heterogeneity Process Protocols documentation Publishing Randomized Randomized Controlled Trials Recruitment Activity Reporting Research Resources Services Social Interaction Social Network Social support Source Spirituality Staging Structure Support System Surveys Telephone Telephone Interviews Testing Time Training Universities Wisconsin Work Writing base coping cost cost effective design experience grandchild hospice environment improved loved ones middle age mortality peer prototype psychological distress public health relevance research study skills social therapy design tool web site web-based social networking

项目摘要

DESCRIPTION (provided by applicant) Advanced cancer engenders significant distress and existential pain for midlife patients who are confronting the possibility of an early death. Narrative (or life review) interventions designed to enhance personal dignity, meaning and purpose in life, and social connection have improved patients' well-being, but they are not widely accessible. The primary aim of this R21 is to evaluate My Living Story (MLS), a narrative and web-based social networking intervention designed to reduce psychological distress and promote existential well-being among middle aged patients with life-threatening cancer. A dignity-enhancing life story is elicited during an expert- guided telephone interview and an edited life manuscript is posted to the patient's private personalized website. The web-based format provides instructional resources to enhance the story, links to quality cancer websites and locally available resources for patients and family, and a social networking platform allowing patients to share their story. The initial life story becomes a "living" story as it is dynamically transformed by the patient and his/her invited social support network. A second aim is to determine whether outcomes are mediated by changes in generativity and/or changes in the quality of the patient's relationships with friends and family. We will also conduct descriptive analyses to explore the learning and communication processes associated with the MLS components and to document feasibility and implementation issues to guide further research with a more ethnically diverse population and greater integration of the patient's social network. One hundred patients (age 30-60) with Stage III or IV cancer will be recruited from the University of Wisconsin's Paul Carbone Comprehensive Cancer Center. A computer, home Internet access, and training will be provided, as needed. Participants will be randomly assigned to the MLS or a control group, called My Own Resources (MOR) for a 2-month intervention. MOR will receive a semi-structured phone interview to assess needs and resources and access to a website with personalized links to quality cancer websites, based on the patient's needs assessment results, and an interactive peer discussion group. All participants will complete surveys at 0, 2 and 4 months. The proposed intervention holds promise for improving the lives of advanced cancer patients and their close others in a cost-effective manner. PUBLIC HEALTH RELEVANCE: The purpose of this study is evaluate the effects of a narrative intervention that provides middle- aged advanced cancer patients with a telephone interview to elicit a dignity-enhancing life story, a well-honed life story manuscript, and a project-specific personalized website with life review educational resources embedded within a social networking platform. We hypothesize that the My Living Story (MLS} intervention will enhance existential well-being and reduce psychological distress. Exploratory analyses of possible mediators, learning processes and feasibility of implementing this intervention will also be conducted for this R21 research study. We will recruit 100 advanced cancer patients who will be randomized to MLS intervention or to a control group, called My Own Resources (MOR). MOR participants receive a needs assessment telephone interview, a summary of their results with recommended resources, and a personalized website with links to salient information and a peer discussion blog. Both interventions are 2 months. We will survey at 0, 2 and 4 months.

描述(由申请人提供)晚期癌症给面临早逝可能性的中年患者带来巨大的痛苦和生存痛苦。旨在提高个人尊严、生活意义和目标以及社会联系的叙述性(或生活回顾)干预措施改善了患者的福祉，但它们并不是广泛可及的。这本R21的主要目的是评估我的生活故事(MLS)，这是一种基于叙事和网络的社交网络干预措施，旨在减少中年癌症患者的心理痛苦，促进他们的生存福祉。在专家指导的电话采访中，一个增强尊严的生活故事被引出，编辑后的生活手稿被张贴在患者的私人个性化网站上。这种基于网络的形式提供了增强故事的教学资源，链接到高质量的癌症网站和为患者及其家人提供的本地资源，以及一个允许患者分享他们的故事的社交网络平台。最初的生活故事变成了一个“活的”故事，因为它被患者和他/她邀请的社会支持网络动态地转变。第二个目标是确定结果是否由生殖能力的变化和/或患者与朋友和家人关系质量的变化所调节。我们还将进行描述性分析，以探索与MLS组成部分相关的学习和沟通过程，并记录可行性和实施问题，以指导进一步的研究，使人群更具种族多样性，并更好地整合患者的社交网络。100名III或IV期癌症患者(年龄30-60岁)将从威斯康星大学的保罗·卡伯恩综合癌症中心招募。根据需要，将提供一台计算机、家庭互联网接入和培训。参与者将被随机分配到MLS或被称为我自己的资源(MOR)的对照组，进行为期2个月的干预。MOR将接受半结构化电话采访，以评估需求和资源，并访问一个网站，该网站具有基于患者需求评估结果的高质量癌症网站的个性化链接，以及一个互动的同行讨论组。所有参与者将在0、2和4个月时完成调查。拟议的干预措施有望以具有成本效益的方式改善晚期癌症患者及其亲人的生活。公共卫生相关性：这项研究的目的是评估叙事干预的效果，该干预为中年晚期癌症患者提供电话采访，以获得增强尊严的生活故事、经过精心磨练的生活故事手稿，以及一个嵌入了社交网络平台的具有生活回顾教育资源的特定项目个性化网站。我们假设《我的生活故事》(My Living Story，MLS)干预将提高生存幸福感，减少心理痛苦。本研究还将对可能的中介因素、学习过程和实施这种干预的可行性进行探索性分析。我们将招募100名晚期癌症患者，他们将被随机分配到MLS干预组或被称为我自己的资源(MOR)的对照组。MOR参与者将接受需求评估电话面试、结果摘要和推荐资源，以及一个带有重要信息链接的个性化网站和一个同行讨论博客。两次干预均为2个月。我们将在0、2和4个月进行调查。