{"title":"BRCA 基因突变妇女在癌症风险管理和决策方面的信息需求","authors":"","doi":"10.1016/j.ejon.2024.102627","DOIUrl":null,"url":null,"abstract":"<div><h3>Purpose</h3><p>Providing women who have tested positive for a pathogenic variant in BRCA1 or BRCA 2 relevant information can help them to make informed decisions about managing their cancer risk. However, there is a lack of targeted informational support for BRCA positive women specific to the Irish context. The objective of this study is to identify the information needs of women diagnosed with a pathogenic variant in BRCA1 or BRCA 2 regarding cancer risk management and decision-making.</p></div><div><h3>Methods</h3><p>This is a descriptive qualitative study. Participants were recruited using purposive sampling and included women with a pathogenic variant in BRCA1 or BRCA2 without a history of breast or ovarian cancer. Two focus groups were held with women (n = 16) to enable them to generate ideas and understanding of their shared information needs. In addition, ten individual interviews were conducted to capture the additional perspectives of health care and relevant policy stakeholders. Interviews were analysed using inductive coding (Braun and Clarke, 2006), with NVivo software (Qsr international, 1999).</p></div><div><h3>Results</h3><p>Three main themes were identified, Cancer Risk Management, Receiving Information, and Implications to Health and Wellbeing. BRCA-positive women expressed a need for information about managing their cancer risk. They were particularly concerned with managing the impact of cancer risk-reducing interventions on their psychological and physical health, wellbeing, and family life. Many women felt they had to advocate for themselves to get treatment and receive information. Participants expressed a need for a comprehensive informational resource where all relevant information related to BRCA risk management could be accessed at a single location.</p></div><div><h3>Conclusion</h3><p>This study suggests that women diagnosed with a pathogenic variant in BRCA1 or BRCA2 in Ireland need more accessible information about managing their cancer risk, and the impact of a BRCA diagnosis on their family, health and wellbeing. These results will be used to identify relevant content for developing an informational decision aid for Irish women.</p></div>","PeriodicalId":51048,"journal":{"name":"European Journal of Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":2.7000,"publicationDate":"2024-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S146238892400125X/pdfft?md5=0557d605adb2466f58c5c7d36c4f259c&pid=1-s2.0-S146238892400125X-main.pdf","citationCount":"0","resultStr":"{\"title\":\"Information needs of women with BRCA mutations regarding cancer risk management and decision-making\",\"authors\":\"\",\"doi\":\"10.1016/j.ejon.2024.102627\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Purpose</h3><p>Providing women who have tested positive for a pathogenic variant in BRCA1 or BRCA 2 relevant information can help them to make informed decisions about managing their cancer risk. However, there is a lack of targeted informational support for BRCA positive women specific to the Irish context. The objective of this study is to identify the information needs of women diagnosed with a pathogenic variant in BRCA1 or BRCA 2 regarding cancer risk management and decision-making.</p></div><div><h3>Methods</h3><p>This is a descriptive qualitative study. Participants were recruited using purposive sampling and included women with a pathogenic variant in BRCA1 or BRCA2 without a history of breast or ovarian cancer. Two focus groups were held with women (n = 16) to enable them to generate ideas and understanding of their shared information needs. In addition, ten individual interviews were conducted to capture the additional perspectives of health care and relevant policy stakeholders. Interviews were analysed using inductive coding (Braun and Clarke, 2006), with NVivo software (Qsr international, 1999).</p></div><div><h3>Results</h3><p>Three main themes were identified, Cancer Risk Management, Receiving Information, and Implications to Health and Wellbeing. BRCA-positive women expressed a need for information about managing their cancer risk. They were particularly concerned with managing the impact of cancer risk-reducing interventions on their psychological and physical health, wellbeing, and family life. Many women felt they had to advocate for themselves to get treatment and receive information. Participants expressed a need for a comprehensive informational resource where all relevant information related to BRCA risk management could be accessed at a single location.</p></div><div><h3>Conclusion</h3><p>This study suggests that women diagnosed with a pathogenic variant in BRCA1 or BRCA2 in Ireland need more accessible information about managing their cancer risk, and the impact of a BRCA diagnosis on their family, health and wellbeing. These results will be used to identify relevant content for developing an informational decision aid for Irish women.</p></div>\",\"PeriodicalId\":51048,\"journal\":{\"name\":\"European Journal of Oncology Nursing\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2024-06-07\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.sciencedirect.com/science/article/pii/S146238892400125X/pdfft?md5=0557d605adb2466f58c5c7d36c4f259c&pid=1-s2.0-S146238892400125X-main.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"European Journal of Oncology Nursing\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S146238892400125X\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"NURSING\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"European Journal of Oncology Nursing","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S146238892400125X","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"NURSING","Score":null,"Total":0}
Information needs of women with BRCA mutations regarding cancer risk management and decision-making
Purpose
Providing women who have tested positive for a pathogenic variant in BRCA1 or BRCA 2 relevant information can help them to make informed decisions about managing their cancer risk. However, there is a lack of targeted informational support for BRCA positive women specific to the Irish context. The objective of this study is to identify the information needs of women diagnosed with a pathogenic variant in BRCA1 or BRCA 2 regarding cancer risk management and decision-making.
Methods
This is a descriptive qualitative study. Participants were recruited using purposive sampling and included women with a pathogenic variant in BRCA1 or BRCA2 without a history of breast or ovarian cancer. Two focus groups were held with women (n = 16) to enable them to generate ideas and understanding of their shared information needs. In addition, ten individual interviews were conducted to capture the additional perspectives of health care and relevant policy stakeholders. Interviews were analysed using inductive coding (Braun and Clarke, 2006), with NVivo software (Qsr international, 1999).
Results
Three main themes were identified, Cancer Risk Management, Receiving Information, and Implications to Health and Wellbeing. BRCA-positive women expressed a need for information about managing their cancer risk. They were particularly concerned with managing the impact of cancer risk-reducing interventions on their psychological and physical health, wellbeing, and family life. Many women felt they had to advocate for themselves to get treatment and receive information. Participants expressed a need for a comprehensive informational resource where all relevant information related to BRCA risk management could be accessed at a single location.
Conclusion
This study suggests that women diagnosed with a pathogenic variant in BRCA1 or BRCA2 in Ireland need more accessible information about managing their cancer risk, and the impact of a BRCA diagnosis on their family, health and wellbeing. These results will be used to identify relevant content for developing an informational decision aid for Irish women.
期刊介绍:
The European Journal of Oncology Nursing is an international journal which publishes research of direct relevance to patient care, nurse education, management and policy development. EJON is proud to be the official journal of the European Oncology Nursing Society.
The journal publishes the following types of papers:
• Original research articles
• Review articles