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瑞典乳腺癌和结直肠癌患者对生活方式相关风险沟通的认知:一项定性访谈研究

Perceptions of lifestyle-related risk communication in patients with breast and colorectal cancer: a qualitative interview study in Sweden.

作者信息

Grauman Åsa, Sundell Erica, Johansson Jennifer Viberg, Cavalli-Björkman Nina, Fahlquist Jessica Nihlén, Hedström Mariann

机构信息

Centre for Research Ethics and Bioethics, Uppsala University, Box 564, Uppsala, SE-751 22, Sweden.

Department of Immunology, Genetics and Pathology, Uppsala university, Rudbecklaboratoriet, Uppsala, SE-751 85, Sweden.

出版信息

Arch Public Health. 2024 Sep 12;82(1):154. doi: 10.1186/s13690-024-01387-1.

Abstract

BACKGROUND

Informing individuals about their risk of cancer can sometimes have negative consequences, such as inflicting unnecessary worry and fostering stigma. This study aims to explore how patients diagnosed with breast or colorectal cancer perceive and experience risk communication, particularly concerning the increased focus on lifestyle behaviors as the cause of cancer.

METHODS

Semi-structured interviews were conducted during autumn 2023, with 23 Swedish individuals, aged 34 to 79 years, diagnosed with breast or colorectal cancer. The collected data were analyzed using inductive thematic analysis described by Braun & Clark. The study adopted an experiential orientation grounded in critical realism.

RESULTS

Five themes with ten sub-themes were identified: Thoughts and feelings about the causes of cancer, Moralizing messages and negative encounters, The need to take action, Balancing uncertain risks and a fulfilling life, and Societal benefits of risk communication. The participants expressed that knowledge of the the cause of cancer is closely related to the possibility of taking preventive action against relapses. Ability to take action was also perceived important for their well-being. Therefore, risk information entails both feelings of self-blame and hope for the future. Participants asked for both information and lifestyle support from healthcare professionals. Lifestyle interventions and patient support groups were solicited and perceived as an important aspect of cancer survivals' well-being, and may help to reduce the cancer-related stigma.

CONCLUSION

Individuals that have or have had breast or colorectal cancer, including those leading healthy lifestyles, found moralistic risk information offensive, leading to feelings of shame when thinking about other peoples thoughts. Balancing information involves providing transparent, evidence-based information while considering individual and social contexts, avoiding stigmatization and blame, and supplementing information with support.

摘要

背景

告知个人患癌风险有时可能会产生负面后果,比如造成不必要的担忧并引发污名化。本研究旨在探讨被诊断患有乳腺癌或结直肠癌的患者如何看待和体验风险沟通,尤其是关于越来越强调生活方式行为是癌症病因这一点。

方法

2023年秋季对23名年龄在34至79岁之间、被诊断患有乳腺癌或结直肠癌的瑞典人进行了半结构化访谈。使用布劳恩和克拉克描述的归纳主题分析法对收集到的数据进行分析。该研究采用了基于批判实在论的经验取向。

结果

确定了五个主题及十个子主题:对癌症病因的想法和感受、道德化信息及负面遭遇、采取行动的必要性、平衡不确定风险与充实生活、以及风险沟通的社会效益。参与者表示,了解癌症病因与采取预防复发措施的可能性密切相关。采取行动的能力对他们的幸福感也很重要。因此,风险信息既带来自责感,也带来对未来的希望。参与者向医疗专业人员寻求信息和生活方式方面的支持。他们请求提供生活方式干预措施和患者支持小组,并认为这是癌症幸存者幸福感的一个重要方面,可能有助于减少与癌症相关的污名化。

结论

患有或曾患有乳腺癌或结直肠癌的个体,包括那些生活方式健康的个体,认为道德化的风险信息具有冒犯性,在想到他人的看法时会产生羞耻感。平衡信息包括提供透明的、基于证据的信息,同时考虑个人和社会背景,避免污名化和指责,并通过支持来补充信息。

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