PDF(Pubmed)
Abstract：
BACKGROUND: Cancer patients often search for information about their health conditions online. Cancer patient narratives have established themselves as a way of providing information and education but also as an effective approach to improving coping with the disease.
OBJECTIVE: We investigated how people affected by cancer perceive cancer patient narratives and whether such stories can potentially improve coping during their own cancer journeys. Additionally, we reflected on whether our co-creative citizen science approach can contribute to gaining knowledge about cancer survival stories and providing peer support.
UNASSIGNED: We applied a co-creative citizen science approach by using quantitative and qualitative research methods with stakeholders (i.e., cancer patients, their relatives, friends and health professionals).
METHODS: Understandability and perceived benefits of cancer survival stories, coping, emotional reactions to the stories and helpful characteristics of the stories.
RESULTS: Cancer survival stories were considered intelligible and beneficial, and they potentially support positive emotions and coping in people affected by cancer. Together with the stakeholders, we identified four main characteristics that evoked positive emotions and that were considered especially helpful: (1) positive attitudes towards life, (2) encouraging cancer journeys, (3) individual coping strategies for everyday challenges and (4) openly shared vulnerabilities.
CONCLUSIONS: Cancer survival stories potentially support positive emotions and coping in people affected by cancer. A citizen science approach is suitable for identifying relevant characteristics of cancer survival stories and may become a helpful educational peer support resource for people coping with cancer.
UNASSIGNED: We adopted a co-creative citizen science approach, wherein citizens and researchers were equally involved throughout the entire project.
OBJECTIVE: We investigated how people affected by cancer perceive cancer patient narratives and whether such stories can potentially improve coping during their own cancer journeys. Additionally, we reflected on whether our co-creative citizen science approach can contribute to gaining knowledge about cancer survival stories and providing peer support.
UNASSIGNED: We applied a co-creative citizen science approach by using quantitative and qualitative research methods with stakeholders (i.e., cancer patients, their relatives, friends and health professionals).
METHODS: Understandability and perceived benefits of cancer survival stories, coping, emotional reactions to the stories and helpful characteristics of the stories.
RESULTS: Cancer survival stories were considered intelligible and beneficial, and they potentially support positive emotions and coping in people affected by cancer. Together with the stakeholders, we identified four main characteristics that evoked positive emotions and that were considered especially helpful: (1) positive attitudes towards life, (2) encouraging cancer journeys, (3) individual coping strategies for everyday challenges and (4) openly shared vulnerabilities.
CONCLUSIONS: Cancer survival stories potentially support positive emotions and coping in people affected by cancer. A citizen science approach is suitable for identifying relevant characteristics of cancer survival stories and may become a helpful educational peer support resource for people coping with cancer.
UNASSIGNED: We adopted a co-creative citizen science approach, wherein citizens and researchers were equally involved throughout the entire project.
摘要：
背景：癌症患者经常在网上搜索有关其健康状况的信息。癌症患者的叙述已成为提供信息和教育的一种方式，也是改善疾病应对的有效方法。
目的：我们调查了受癌症影响的人如何看待癌症患者的叙述，以及这些故事是否有可能改善他们在癌症旅程中的应对。此外,我们反思了我们的共同创意公民科学方法是否有助于获得有关癌症生存故事的知识并提供同伴支持。
■我们通过与利益相关者使用定量和定性研究方法（即，癌症患者,他们的亲戚,朋友和健康专业人士)。
方法：癌症生存故事的可理解性和感知益处，应对,对故事的情绪反应和故事的有益特征。
结果：癌症生存故事被认为是可理解和有益的，它们可能支持受癌症影响的人的积极情绪和应对。与利益相关者一起，我们确定了引起积极情绪并且被认为特别有用的四个主要特征：（1）对生活的积极态度，（2）鼓励癌症旅行，（3）应对日常挑战的个人应对策略和（4）公开共享的漏洞。
结论：癌症生存故事可能支持受癌症影响的人的积极情绪和应对。公民科学方法适用于识别癌症生存故事的相关特征，并且可能成为应对癌症的人们的有用教育同伴支持资源。
■我们采用了一种共同创新的公民科学方法，其中公民和研究人员在整个项目中同样参与。
目的：我们调查了受癌症影响的人如何看待癌症患者的叙述，以及这些故事是否有可能改善他们在癌症旅程中的应对。此外,我们反思了我们的共同创意公民科学方法是否有助于获得有关癌症生存故事的知识并提供同伴支持。
■我们通过与利益相关者使用定量和定性研究方法（即，癌症患者,他们的亲戚,朋友和健康专业人士)。
方法：癌症生存故事的可理解性和感知益处，应对,对故事的情绪反应和故事的有益特征。
结果：癌症生存故事被认为是可理解和有益的，它们可能支持受癌症影响的人的积极情绪和应对。与利益相关者一起，我们确定了引起积极情绪并且被认为特别有用的四个主要特征：（1）对生活的积极态度，（2）鼓励癌症旅行，（3）应对日常挑战的个人应对策略和（4）公开共享的漏洞。
结论：癌症生存故事可能支持受癌症影响的人的积极情绪和应对。公民科学方法适用于识别癌症生存故事的相关特征，并且可能成为应对癌症的人们的有用教育同伴支持资源。
■我们采用了一种共同创新的公民科学方法，其中公民和研究人员在整个项目中同样参与。
