带着希望生活：为农村晚期癌症患者照顾者开发心理社会支持计划。
Living with hope: developing a psychosocial supportive program for rural women caregivers of persons with advanced cancer.
机构信息
Faculty of Nursing, 3rd Floor Clinical Sciences Building, University of Alberta, Edmonton Alberta T6G 2G3, Canada.
出版信息
BMC Palliat Care. 2010 Mar 26;9:3. doi: 10.1186/1472-684X-9-3.
BACKGROUND
Hope is defined by caregivers as the inner strength to achieve future good and to continue care giving. Pilot test findings of a Living with Hope Program (LWHP) suggested it is an acceptable and feasible intervention for use by family caregivers. Although it shows promise in potentially increasing hope and quality of life, further testing and development is needed. Questions remain as to: a) what are the mechanisms through which the LWHP affects outcomes and b) how long it is effective? The overall purpose of this time series mixed method study is the further development and testing of the LWHP by:a. Determining the mechanisms of the LWHP by testing a LWHP conceptual model in which self-efficacy, and loss/grief are hypothesized intermediary variables for changes in hope, and subsequently quality of life among rural women caring for persons with advanced cancer, and;b. Exploring the longitudinal effects of the LWHP on hope, quality of life and health services utilization among rural women caring for persons with advanced cancer.
METHODS/DESIGN: Using a time-series embedded mixed method design, data will be collected from 200 rural women caregivers. Following the collection of baseline and outcome variables, the intervention (LWHP) is applied to all subjects. Subjects are followed over time with repeated measures of outcome variables (1 wk, 2 wk, 3, 6 and 12 months). The journals that are completed as part of the LWHP comprise the qualitative data. Health services utilization data will be collected from the Saskatchewan Health Administrative Database for all subjects one year prior and one year after study enrolment.Path analysis will be used to test the model post LWHP, at 1 and 2 weeks. Two-factor ANCOVA will determine patterns over time and Cortazzi's narrative analysis will be used to analyze subjects journals completed as part of the LWHP.
DISCUSSION
Data Collection began January 2009 and is expected to be completed within 2 years time. Monthly meetings with data collectors and site collaborators have been instrumental in revisions to the original study protocol such as identifying and adding additional study sites.
TRIAL REGISTRATION
Trial Registration; Clinical Trials.Gov. NCT01081301.
背景
希望是由护理人员定义的，是实现未来美好和继续护理的内在力量。一项“希望生活计划”（LWHP）的试点测试结果表明，该计划对于家庭护理人员来说是一种可以接受和可行的干预措施。尽管它显示出有可能增加希望和生活质量的潜力，但还需要进一步的测试和发展。目前仍存在一些问题：a）LWHP 通过什么机制影响结果，b）它的效果能持续多久？本时间序列混合方法研究的总体目的是通过以下方式进一步开发和测试 LWHP：a. 通过测试 LWHP 概念模型来确定 LWHP 的机制，在该模型中，自我效能和损失/悲伤被假设为希望变化的中间变量，随后是农村妇女照顾晚期癌症患者的生活质量；b. 探索 LWHP 对农村妇女照顾晚期癌症患者的希望、生活质量和卫生服务利用的纵向影响。
方法/设计：本研究采用时间序列嵌入混合方法设计，将从 200 名农村妇女护理人员中收集数据。在收集基线和结果变量后，将干预措施（LWHP）应用于所有受试者。随着时间的推移，通过重复测量结果变量（1 周、2 周、3、6 和 12 个月）对受试者进行随访。LWHP 完成的日记构成了定性数据。将在研究登记后的 1 年和 2 年内，从萨斯喀彻温省卫生行政数据库中为所有受试者收集卫生服务利用数据。路径分析将用于测试 LWHP 后、1 周和 2 周的模型。双因素 ANCOVA 将确定随时间的变化模式，Cortazzi 的叙述性分析将用于分析作为 LWHP 一部分完成的受试者日记。
讨论
数据收集于 2009 年 1 月开始，预计在 2 年内完成。每月与数据收集者和现场合作者举行会议，对原始研究方案进行了修订，例如确定并增加了额外的研究地点。
试验注册
试验注册；ClinicalTrials.gov. NCT01081301。
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