ArticleHealth expectations : an international journal of public participation in health care and health policy2023
Cancer survival stories: Perception, creation, and potential use case.
Article in Health expectations : an international journal of public participation in health care and health policy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.
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Who cites it
6 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of peer support interventions to improve psychosocial functioning among cancer survivors: can findings be translated to survivors with a rare cancer living rurally?Orphanet journal of rare diseases · 2024Pooled it
- YouTube as a Source of Patient Information for Malignant and Benign Primary Bone Tumors.Journal of cancer education : the official journal of the American Association for Cancer Education · 2026Article
- Cocreation of a Mobile App (AYABytes) by Physicians and Adolescents and Young Adults With Cancer to Improve Access to Cancer-Related Resources and Reduce Distress: Protocol for a Single-Arm Feasibility Study.JMIR research protocols · 2025Article
- Personal narratives to support learning about lung transplant for people with cystic fibrosis.Patient education and counseling · 2025Article
- Article
- Cancer survival stories: Perception, creation, and potential use case.Health expectations : an international journal of public participation in health care and health policy · 2023Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundCancer 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.
objectiveWe 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. DESIGN, SETTING AND STAKEHOLDERS: 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).
main outcome measuresUnderstandability and perceived benefits of cancer survival stories, coping, emotional reactions to the stories and helpful characteristics of the stories.
resultsCancer 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.
conclusionsCancer 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. PATIENT OR PUBLIC CONTRIBUTIONS: We adopted a co-creative citizen science approach, wherein citizens and researchers were equally involved throughout the entire project.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.