通过摄影小说,提高有遗传性乳腺癌和卵巢癌风险的拉丁裔妇女对基因检测和咨询的认识,并对她们进行这方面的教育。

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-10-01 Epub Date: 2024-09-06 DOI:10.1007/s12687-024-00728-5
Rolando Barajas, Clara B Barajas, Yaideliz M Romero Ramos, Sara Gómez Trillos, Sabrina Sawhney, Claudia Campos, Alejandra Hurtado-de-Mendoza, Melissa Rotunno, Elizabeth Gillanders
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引用次数: 0

摘要

与非拉美裔白人相比,拉美裔女性接受遗传咨询和基因检测(GCT)的可能性较低,原因在于系统性和患者层面的障碍。我们开发并测试了摄影短剧,以提高有遗传性乳腺癌和卵巢癌(HBOC)风险的拉丁裔女性对遗传咨询和基因检测的认识。摄影短片的内容取自现有的具有文化针对性的叙事视频,该视频的重点是改善有 HBOC 风险的拉美女性对 GCT 的使用。我们采用混合方法,对癌症患者(10 人)及其亲属(10 人)进行了访谈,通过对自我评估的 GCT 知识和与家人讨论癌症的意愿进行前、后调查项目,评估了该动画片的初步效果。卫生工作者(n = 10)对短剧内容提供了反馈意见。采用 McNemar 检验法检验了在故事前和故事后结果比例的差异。采用协商一致的定性研究方法,在 Dedoose 中对访谈内容进行了转录和编码。阅读影集后,患者对 GCT 的自评知识增加了 22%(p = 0.16),患者自评知识从 50% 增加到 60%,亲属自评知识从 63% 增加到 100%。同样,通过阅读漫画,与家人谈论癌症的意愿提高了 33%(p = 0.02),患者从 70% 提高到 100%,亲属从 38% 提高到 75%。我们确定了六个主题,其中一些围绕着家庭故事的信息、反馈以及 GCT 的感知障碍。总的来说,参与者喜欢用漫画来提高对 GCT 的认识,并与家人进行癌症对话。家庭影剧有可能被用作教育工具,提高拉丁裔高危家庭对 GCT 的认识,并增加他们与癌症的交流。
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Raising awareness and education of genetic testing and counseling through fotonovelas among Latina women at risk for hereditary breast and ovarian cancer.

Latinas are less likely to receive genetic counseling and genetic testing (GCT) compared to non-Latina Whites because of systemic and patient-level barriers. We developed and tested fotonovelas to increase awareness of GCT among Latinas at-risk of hereditary breast and ovarian cancer (HBOC). Content for the fotonovelas was drawn from an existing culturally targeted narrative video focused on improving GCT use among Latinas at-risk of HBOC. Using mixed methods, we interviewed cancer patients (n = 10) and their relatives (n = 10) to assess the preliminary efficacy of the fotonovelas through pre-and post-fotonovela items assessing self-rated knowledge of GCT and willingness to discuss cancer with family. Health workers (n = 10) provided feedback on the fotonovela content. McNemar's test was used to examine differences in the proportions of the outcomes pre- and post-fotonovelas. Interviews were transcribed and coded in Dedoose using a consensual qualitative research approach. Reading the fotonovelas increased self-rated knowledge of GCT by 22% (p = 0.16), from 50 to 60% in patients and from 63 to 100% among relatives. Analogously, reading the fotonovela increased willingness to talk about cancer with family by 33% (p = 0.02), from 70 to 100% in patients and from 38 to 75% in relatives. We identified six themes, some centered around the fotonovela's message, feedback, and perceived barriers to GCT. Overall, participants liked the use of fotonovelas to increase GCT awareness and cancer conversations with family. Fotonovelas could potentially be used as educational tools to increase GCT awareness and cancer conversations among Latino families at-risk of HBOC.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
期刊最新文献
Key contextual factors involved with participation in medical and genomic screening and research for African American and White Americans: a qualitative inquiry. Factors influencing pregnant women's decision to accept or decline prenatal screening and diagnosis - a qualitative study. Acceptability of dried blood spot collection by primary caregivers of Filipino patients with maple syrup urine disease (MSUD) and phenylketonuria (PKU). Opportunities and challenges for identifying undiagnosed Rare Disease patients through analysis of primary care records: long QT syndrome as a test case. Feasibility of an environmental scan-based approach to collecting information about factors impacting cancer genetics services in Latin American countries.
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