Co-Creation of Breast Cancer Risk Communication Tools and an Assessment of Risk Factor Awareness: A Qualitative Study of Patients and the Public in India.

Published version
Repository DOI

Type
Article
Change log
Authors
Narayan, Jyoti 
Gentry-Maharaj, Aleksandra  ORCID logo  https://orcid.org/0000-0001-7270-9762
Deo, Suryanarayana 
Vijaykumar, Dehannathparambil Kottarathil 
Abstract

BackgroundLow awareness of BC and its associated risk factors causes delays in diagnosis and impacts survival. It is critical to communicate BC risk to patients in a format that they are easily able to understand. Our study aim was to develop easy-to-follow transmedia prototypes to communicate BC risk and evaluate user preferences, alongside exploring awareness of BC and its risk factors.MethodsPrototypes of transmedia tools for risk communication were developed with multidisciplinary input. A qualitative in-depth online interview study was undertaken using a pre-defined topic guide of BC patients (7), their relatives (6), the general public (6), and health professionals (6). Interviews were analyzed using a thematic approach.FindingsMost participants preferred pictographic representations (frequency format) of lifetime risk and risk factors and storytelling using short animations and comic strips (infographics) for communicating genetic risk and testing: "In a short time, they explained it very well, and I liked it". Suggestions included minimizing technical terminology, decreasing the delivery speed, "two-way dialogue", and using local "language for different locations". There was low awareness of BC, with some understanding of age and hereditary risk factors but limited knowledge of reproductive factors.InterpretationOur findings support use of multiple context-specific multimedia tools in communicating cancer risk in an easy-to-understand way. The preference for storytelling using animations and infographics is a novel finding and should be more widely explored.

Description
Keywords
Breast cancer, Patient And Public Involvement, Risk Communication, Lmic, Risk Representation, Transmedia Tools
Journal Title
Cancers
Conference Name
Journal ISSN
2072-6694
Volume Title
15
Publisher
Sponsorship
Cancer Research, UK & Department of Biotechnology, India (CRUK - DBT) Alliance (IA/AAC/19/1/700009)