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
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...
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-05-01
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| Series: | Cancers |
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| Online Access: | https://www.mdpi.com/2072-6694/15/11/2973 |
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| author | Divya Pillai Jyoti Narayan Aleksandra Gentry-Maharaj Suryanarayana Deo Dehannathparambil Kottarathil Vijaykumar Poulome Mukherjee Nitya Wadhwa Aparajita Bhasin Ashutosh Mishra Anupama Rajanbabu Ravi Kannan Zakir Husain Avinash Kumar Antonis C. Antoniou Ranjit Manchanda Usha Menon |
| author_facet | Divya Pillai Jyoti Narayan Aleksandra Gentry-Maharaj Suryanarayana Deo Dehannathparambil Kottarathil Vijaykumar Poulome Mukherjee Nitya Wadhwa Aparajita Bhasin Ashutosh Mishra Anupama Rajanbabu Ravi Kannan Zakir Husain Avinash Kumar Antonis C. Antoniou Ranjit Manchanda Usha Menon |
| author_sort | Divya Pillai |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-11T03:10:34Z |
| format | Article |
| id | doaj.art-6816a523afd64df5b5991c98b5217cfd |
| institution | Directory Open Access Journal |
| issn | 2072-6694 |
| language | English |
| last_indexed | 2024-03-11T03:10:34Z |
| publishDate | 2023-05-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Cancers |
| spelling | doaj.art-6816a523afd64df5b5991c98b5217cfd2023-11-18T07:39:02ZengMDPI AGCancers2072-66942023-05-011511297310.3390/cancers15112973Co-Creation of Breast Cancer Risk Communication Tools and an Assessment of Risk Factor Awareness: A Qualitative Study of Patients and the Public in IndiaDivya Pillai0Jyoti Narayan1Aleksandra Gentry-Maharaj2Suryanarayana Deo3Dehannathparambil Kottarathil Vijaykumar4Poulome Mukherjee5Nitya Wadhwa6Aparajita Bhasin7Ashutosh Mishra8Anupama Rajanbabu9Ravi Kannan10Zakir Husain11Avinash Kumar12Antonis C. Antoniou13Ranjit Manchanda14Usha Menon15Translational Health Science & Technology Institute, NCR Biotech Science Cluster, Faridabad—Gurgaon Expressway, Faridabad 121001, IndiaQuicksand Design Studio, New Delhi 110047, IndiaMRC Clinical Trials Unit at UCL, Institute of Clinical Trials & Methodology, Faculty of Population Health Sciences, University College London, London WC1V 6LJ, UKAll India Institute of Medical Sciences, New Delhi 110029, IndiaAmrita Institute of Medical Sciences & Research Centre, Kochi 682041, IndiaCachar Cancer Hospital & Research Centre, Meherpur, Silchar 788015, IndiaTranslational Health Science & Technology Institute, NCR Biotech Science Cluster, Faridabad—Gurgaon Expressway, Faridabad 121001, IndiaQuicksand Design Studio, New Delhi 110047, IndiaAll India Institute of Medical Sciences, New Delhi 110029, IndiaAmrita Institute of Medical Sciences & Research Centre, Kochi 682041, IndiaCachar Cancer Hospital & Research Centre, Meherpur, Silchar 788015, India86/1 College Street, Economics Department, Presidency University Kolkata, Kolkata 700073, IndiaQuicksand Design Studio, New Delhi 110047, IndiaCentre for Cancer Genetic Epidemiology, Department of Public Health and Primary Care, University of Cambridge, Cambridge CB1 8RN, UKWolfson Institute of Population Health, Barts CRUK Cancer Centre, Queen Mary University of London, Charterhouse Square, London EC1M 6BQ, UKMRC Clinical Trials Unit at UCL, Institute of Clinical Trials & Methodology, Faculty of Population Health Sciences, University College London, London WC1V 6LJ, UKBackground: 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.https://www.mdpi.com/2072-6694/15/11/2973breast cancerrisk communicationpatient and public involvementtransmedia toolsrisk representationLMIC |
| spellingShingle | Divya Pillai Jyoti Narayan Aleksandra Gentry-Maharaj Suryanarayana Deo Dehannathparambil Kottarathil Vijaykumar Poulome Mukherjee Nitya Wadhwa Aparajita Bhasin Ashutosh Mishra Anupama Rajanbabu Ravi Kannan Zakir Husain Avinash Kumar Antonis C. Antoniou Ranjit Manchanda Usha Menon 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 Cancers breast cancer risk communication patient and public involvement transmedia tools risk representation LMIC |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| topic | breast cancer risk communication patient and public involvement transmedia tools risk representation LMIC |
| url | https://www.mdpi.com/2072-6694/15/11/2973 |
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