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抱持希望:探索农村晚期癌症患者女性照护者的希望与挑战。

Hope against hope: exploring the hopes and challenges of rural female caregivers of persons with advanced cancer.

机构信息

School of Geography and Earth Sciences, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4 K1, Canada.

出版信息

BMC Palliat Care. 2013 Dec 17;12(1):44. doi: 10.1186/1472-684X-12-44.

Abstract

BACKGROUND

This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges.

METHODS

Twenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi's (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled 'hope against hope.'

RESULTS

The journal entries highlighted: the caregivers' hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and 'hope against hope' describes how hope persists even when there is no hope for a cure.

CONCLUSIONS

This research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers.

摘要

背景

本文聚焦于一项希望干预措施研究的定性部分,该研究评估了一项名为“带着希望生活计划”(LWHP)的希望干预措施,旨在培养照顾晚期癌症患者的家庭女性照顾者的希望。本研究旨在以故事的形式分享农村女性照顾者照顾晚期癌症患者的经验,重点关注培养他们希望的因素。希望是一种心理社会和精神资源,已被发现有助于家庭照顾者度过困难的过渡和挑战。

方法

来自加拿大西部农村的 23 名参与者完成了记录他们的希望和挑战的日常日记条目。采用科塔齐(2001)的叙事分析方法对数据进行分析,然后将其转录为题为“希望与希望对抗”的叙述。

结果

日记条目突出显示了:照顾者的希望和促进他们希望的因素;照顾的各种挑战;自我保健策略;以及他们的情感历程。希望贯穿于他们的整个经历,“希望与希望对抗”描述了即使没有治愈的希望,希望也如何持续存在。

结论

这项研究有助于评估影响照顾者希望和生活质量的干预措施,同时展示了叙事方法在研究和实践中的价值。日记记录对于孤立无援、可能缺乏直接专业和同伴支持的农村照顾者可能特别有价值。卫生专业人员和其他提供者有机会与家庭照顾者建立信任关系,在这种关系中,他们可以公开讲述自己的故事,而从业者更关注照顾者的心理社会需求。

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