An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia
Abstract Introduction Identification of one’s status as a BRCA1/2 pathogenic variant carrier often marks the start of navigating challenging decisions related to cancer risk management and result disclosure. Carriers report unmet informational needs, but studies have yet to explore the specific aspe...
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| Format: | Article |
| Language: | English |
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BMC
2020-10-01
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| Series: | Hereditary Cancer in Clinical Practice |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s13053-020-00154-x |
| _version_ | 1818335120385376256 |
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| author | Jeanette Yuen Si Ming Fung Chin Leong Sia Mallika Venkatramani Tarryn Shaw Eliza Courtney Shao-Tzu Li Jianbang Chiang Veronique Kiak-Mien Tan Benita Kiat-Tee Tan Joanne Ngeow |
| author_facet | Jeanette Yuen Si Ming Fung Chin Leong Sia Mallika Venkatramani Tarryn Shaw Eliza Courtney Shao-Tzu Li Jianbang Chiang Veronique Kiak-Mien Tan Benita Kiat-Tee Tan Joanne Ngeow |
| author_sort | Jeanette Yuen |
| collection | DOAJ |
| description | Abstract Introduction Identification of one’s status as a BRCA1/2 pathogenic variant carrier often marks the start of navigating challenging decisions related to cancer risk management and result disclosure. Carriers report unmet informational needs, but studies have yet to explore the specific aspects of and how best to fulfill these needs. This study aims to explore the informational needs of BRCA1/2 pathogenic variant carriers in Asia to inform for the design of educational materials to support risk management decision-making. Methods Semi-structured in-depth interviews were conducted with two male and 22 female English-speaking BRCA1/2 pathogenic variant carriers, aged 29–66 years, identified through the Cancer Genetics Service at the National Cancer Centre Singapore. A grounded theory approach with thematic analysis was undertaken to extract dominant themes. Results Four themes were identified: (i) proactive online information seeking behaviors (ii) personalized informational needs; (iii) challenges in sharing the results; and (iv) lack of genetic awareness. Discussion Participants highlight challenges with sharing their result arising from significant post-result informational needs, which have manifested into proactive online information-seeking behaviors. They desire for an online source of information, where content is personalized, reliable and local. Participants foresee the potential of an online resource to raise genetic awareness. This suggests the use of a culturally tailored online-based genetics resource, to promote result disclosure, empower risk-management decisions and raise genetic literacy rates. |
| first_indexed | 2024-12-13T14:18:22Z |
| format | Article |
| id | doaj.art-974574f75dcd4c519ae6cfdc80aeaa86 |
| institution | Directory Open Access Journal |
| issn | 1897-4287 |
| language | English |
| last_indexed | 2024-12-13T14:18:22Z |
| publishDate | 2020-10-01 |
| publisher | BMC |
| record_format | Article |
| series | Hereditary Cancer in Clinical Practice |
| spelling | doaj.art-974574f75dcd4c519ae6cfdc80aeaa862022-12-21T23:42:10ZengBMCHereditary Cancer in Clinical Practice1897-42872020-10-0118111010.1186/s13053-020-00154-xAn in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in AsiaJeanette Yuen0Si Ming Fung1Chin Leong Sia2Mallika Venkatramani3Tarryn Shaw4Eliza Courtney5Shao-Tzu Li6Jianbang Chiang7Veronique Kiak-Mien Tan8Benita Kiat-Tee Tan9Joanne Ngeow10Cancer Genetics Service, Division of Medical Oncology, National Cancer Centre SingaporeCancer Genetics Service, Division of Medical Oncology, National Cancer Centre SingaporeLee Kong Chian School of Medicine, Nanyang Technological UniversityCancer Genetics Service, Division of Medical Oncology, National Cancer Centre SingaporeCancer Genetics Service, Division of Medical Oncology, National Cancer Centre SingaporeCancer Genetics Service, Division of Medical Oncology, National Cancer Centre SingaporeCancer Genetics Service, Division of Medical Oncology, National Cancer Centre SingaporeCancer Genetics Service, Division of Medical Oncology, National Cancer Centre SingaporeSinghealth-Duke NUS Breast CentreSinghealth-Duke NUS Breast CentreCancer Genetics Service, Division of Medical Oncology, National Cancer Centre SingaporeAbstract Introduction Identification of one’s status as a BRCA1/2 pathogenic variant carrier often marks the start of navigating challenging decisions related to cancer risk management and result disclosure. Carriers report unmet informational needs, but studies have yet to explore the specific aspects of and how best to fulfill these needs. This study aims to explore the informational needs of BRCA1/2 pathogenic variant carriers in Asia to inform for the design of educational materials to support risk management decision-making. Methods Semi-structured in-depth interviews were conducted with two male and 22 female English-speaking BRCA1/2 pathogenic variant carriers, aged 29–66 years, identified through the Cancer Genetics Service at the National Cancer Centre Singapore. A grounded theory approach with thematic analysis was undertaken to extract dominant themes. Results Four themes were identified: (i) proactive online information seeking behaviors (ii) personalized informational needs; (iii) challenges in sharing the results; and (iv) lack of genetic awareness. Discussion Participants highlight challenges with sharing their result arising from significant post-result informational needs, which have manifested into proactive online information-seeking behaviors. They desire for an online source of information, where content is personalized, reliable and local. Participants foresee the potential of an online resource to raise genetic awareness. This suggests the use of a culturally tailored online-based genetics resource, to promote result disclosure, empower risk-management decisions and raise genetic literacy rates.http://link.springer.com/article/10.1186/s13053-020-00154-xBRCA1/2Informational needsInterviewOnlineGenetic awareness |
| spellingShingle | Jeanette Yuen Si Ming Fung Chin Leong Sia Mallika Venkatramani Tarryn Shaw Eliza Courtney Shao-Tzu Li Jianbang Chiang Veronique Kiak-Mien Tan Benita Kiat-Tee Tan Joanne Ngeow An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia Hereditary Cancer in Clinical Practice BRCA1/2 Informational needs Interview Online Genetic awareness |
| title | An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia |
| title_full | An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia |
| title_fullStr | An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia |
| title_full_unstemmed | An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia |
| title_short | An in-depth exploration of the post-test informational needs of BRCA1 and BRCA2 pathogenic variant carriers in Asia |
| title_sort | in depth exploration of the post test informational needs of brca1 and brca2 pathogenic variant carriers in asia |
| topic | BRCA1/2 Informational needs Interview Online Genetic awareness |
| url | http://link.springer.com/article/10.1186/s13053-020-00154-x |
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