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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
Peer-reviewed

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

BACKGROUND: Low 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. METHODS: Prototypes 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. FINDINGS: Most 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. INTERPRETATION: Our 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

LMIC, breast cancer, patient and public involvement, risk communication, risk representation, transmedia tools

Journal Title

Cancers (Basel)

Conference Name

Journal ISSN

2072-6694
2072-6694

Volume Title

15

Publisher

MDPI AG
Sponsorship
Cancer Research, UK & Department of Biotechnology, India (CRUK - DBT) Alliance (IA/AAC/19/1/700009)