Cancer survival stories: Perception, creation, and potential use case.
cancer
cancer survivors
citizen science
mixed methods
participatory research
patient education
patient narratives
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
Aug 2023
Aug 2023
Historique:
revised:
21
03
2023
received:
23
12
2022
accepted:
28
03
2023
medline:
17
7
2023
pubmed:
3
5
2023
entrez:
3
5
2023
Statut:
ppublish
Résumé
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. 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. 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). Understandability and perceived benefits of cancer survival stories, coping, emotional reactions to the stories and helpful characteristics of the stories. 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. 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. We adopted a co-creative citizen science approach, wherein citizens and researchers were equally involved throughout the entire project.
Sections du résumé
BACKGROUND
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
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.
DESIGN, SETTING AND STAKEHOLDERS
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).
MAIN OUTCOME MEASURES
METHODS
Understandability and perceived benefits of cancer survival stories, coping, emotional reactions to the stories and helpful characteristics of the stories.
RESULTS
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
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.
PATIENT OR PUBLIC CONTRIBUTIONS
UNASSIGNED
We adopted a co-creative citizen science approach, wherein citizens and researchers were equally involved throughout the entire project.
Identifiants
pubmed: 37132762
doi: 10.1111/hex.13760
pmc: PMC10349243
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1551-1561Subventions
Organisme : Swiss Cancer Foundation
Organisme : Participatory Science Academy of the University of Zurich and ETH Zurich
ID : PWA 01/2019
Informations de copyright
© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.
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