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'Ambivalence' at the end of life: how to understand patients' wishes ethically.生命终末期的矛盾心理:如何从伦理角度理解患者的意愿。
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The multidimensionality of spiritual wellbeing: peace, meaning, and faith and their association with quality of life and coping in oncology.精神幸福感的多维性:和平、意义、信仰及其与肿瘤患者生活质量和应对方式的关系。
Psychooncology. 2012 Jun;21(6):602-10. doi: 10.1002/pon.1937. Epub 2011 Mar 2.
4
Complications among colorectal cancer survivors: SF-6D preference-weighted quality of life scores.结直肠癌幸存者的并发症:SF-6D 偏好加权健康相关生活质量评分。
Med Care. 2011 Mar;49(3):321-6. doi: 10.1097/MLR.0b013e31820194c8.
5
Individual and dyadic relations between spiritual well-being and quality of life among cancer survivors and their spousal caregivers.癌症幸存者及其配偶照顾者的精神幸福感与生活质量的个体和对偶关系。
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The health-related quality of life in long-term colorectal cancer survivors study: objectives, methods and patient sample.长期结直肠癌幸存者的健康相关生活质量研究:目标、方法及患者样本
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造口术的长期结直肠癌幸存者的精神幸福感。

Spiritual well-being in long-term colorectal cancer survivors with ostomies.

机构信息

The Center for Health Research, Northwest/Hawaii/Southeast, Kaiser Permanente Northwest, Portland, OR, USA.

出版信息

Psychooncology. 2013 Nov;22(11):2513-21. doi: 10.1002/pon.3318. Epub 2013 Jun 7.

DOI:10.1002/pon.3318
PMID:23749460
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4105015/
Abstract

OBJECTIVE

Spiritual well-being (SpWB) is integral to health-related quality of life. The challenges of colorectal cancer (CRC) and subsequent bodily changes can affect SpWB. We analyzed the SpWB of CRC survivors with ostomies.

METHODS

Two-hundred-eighty-three long-term (≥ 5 years) CRC survivors with permanent ostomies completed the modified City of Hope Quality of Life-Ostomy (mCOH-QOL-O) questionnaire. An open-ended question elicited respondents' greatest challenge in living with an ostomy. We used content analysis to identify SpWB responses and develop themes. We analyzed responses on the three-item SpWB sub-scale.

RESULTS

Open-ended responses from 52% of participants contained SpWB content. Fifteen unique SpWB themes were identified. Sixty percent of individuals expressed positive themes such as "positive attitude", "I am fortunate", "appreciate life more", and "strength through religious faith". Negative themes, expressed by only 29% of respondents, included "struggling to cope", "not feeling 'normal' ", and "loss". Fifty-five percent of respondents expressed ambivalent themes including "learning acceptance", "an ostomy is the price for survival", "reason to be around despite suffering", and "continuing to cope despite challenges". The majority (64%) had a high SpWB sub-scale score.

CONCLUSIONS

Although CRC survivors with ostomies infrequently mentioned negative SpWB themes as a major challenge, ambivalent themes were common. SpWB themes were often mentioned as a source of resilience or part of the struggle to adapt to an altered body after cancer surgery. Interventions to improve the quality of life of cancer survivors should contain program elements designed to address SpWB that support personal meaning, inner peace, inter connectedness, and belonging.

摘要

目的

精神幸福感(SpWB)是健康相关生活质量的重要组成部分。结直肠癌(CRC)及其随后的身体变化带来的挑战会影响 SpWB。我们分析了有造口术的 CRC 幸存者的 SpWB。

方法

283 名长期(≥5 年)有永久性造口术的 CRC 幸存者完成了改良版希望之城生活质量-造口(mCOH-QOL-O)问卷。一个开放式问题让受访者描述他们在造口生活中最大的挑战。我们使用内容分析法识别 SpWB 反应并开发主题。我们分析了三项目 SpWB 子量表的反应。

结果

52%的参与者的开放式回答中包含 SpWB 内容。确定了 15 个独特的 SpWB 主题。60%的个体表达了积极的主题,如“积极的态度”、“我很幸运”、“更珍惜生活”和“通过宗教信仰获得力量”。只有 29%的受访者表达了消极的主题,包括“努力应对”、“感觉不正常”和“失落”。55%的受访者表达了矛盾的主题,包括“学会接受”、“造口是生存的代价”、“尽管遭受痛苦也要继续存在”和“尽管面临挑战也要继续应对”。大多数(64%)的人 SpWB 子量表得分较高。

结论

尽管有造口术的 CRC 幸存者很少将负面的 SpWB 主题作为主要挑战,但矛盾的主题很常见。SpWB 主题经常被提及作为适应癌症手术后身体改变的韧性或挣扎的来源。改善癌症幸存者生活质量的干预措施应包含旨在解决支持个人意义、内心平静、相互联系和归属感的 SpWB 的项目要素。