Sharing research results with Latina breast cancer survivors who participated in a community-engaged behavioral RCT study: a descriptive cross-sectional survey study.
Sharing research results with Latina breast cancer survivors who participated in a community-engaged behavioral RCT study: a descriptive cross-sectional survey study.
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DOI：
10.1186/s13063-021-05945-8
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发表时间：
2022-01-08
期刊：
影响因子：
2.5
通讯作者：
Nápoles AM
中科院分区：
文献类型：
--
作者：
Bonilla J;Alhomsi A;Santoyo-Olsson J;Stewart AL;Ortiz C;Samayoa C;Torres-Nguyen A;Palomino H;Coleman V;Urias A;Gonzalez N;Cervantes SA;Duron Y;Nápoles AM
少数民族经常听到的一个合理的关切是，研究人员在研究结束后不注意与参与者分享研究结果。很少有研究调查返回的总体研究结果对参与者态度的影响，特别是在研究中代表性不足的人群中。在拉丁裔研究参与者中，提供研究结果摘要可以提高研究参与度。我们评估了拉丁裔乳腺癌幸存者对接受研究结果的反应以及他们对参与未来研究的态度。在这项横断面调查研究中，所有参加过两项行为随机对照试验（RCT）的女性都被邮寄了一封总结研究结果的信件（使用书面和图形格式）和一份评估问题和理解结果的问卷，分享结果的重要性，参与未来研究的意愿以及接收结果的格式偏好。包括一个邮资已付的信封，用于返回已完成的调查问卷。Logistic回归分析了年龄、教育程度和城乡居住地对格式偏好和参与意愿的影响。调查样本包括304名低收入，主要是讲西班牙语的拉丁裔乳腺癌幸存者（151名来自城市，153名来自农村社区），他们参加了两项随机对照试验，测试为拉丁裔乳腺癌幸存者设计的压力管理计划。92名妇女（30.3%）交回了问卷。大多数妇女（91.1%）表示，她们理解研究结果没有困难，97%的人认为研究人员与参与者分享研究结果非常/极其重要。大多数（60.2%）报告说，收到结果增加了他们参与未来研究的意愿。大约一半（51.7%）的人没有格式偏好，37.4%的人喜欢书面摘要，10.9%的人喜欢图表。这项研究是重要的第一步，以了解返回的研究结果在研究中代表性不足的人群中的影响。返回研究结果并了解这样做的影响与保持社区参与研究的所有阶段是一致的。研究结果表明，用简单的语言分享汇总的研究结果在参与者对结果的理解方面几乎没有问题，参与者认为这很重要。ClinicalTrials.govNCT02931552注册日期：2016年10月13日和NCT 01383174注册日期：2011年6月28日。在线版本包含补充材料，可通过10.1186/s13063-021-05945-8获得。
An often heard and justifiable concern of ethnic minorities is related to researchers’ lack of attention to sharing the results of a study with participants after the study has concluded. Few studies have examined the effects of returning overall study results on participants’ attitudes, especially among populations underrepresented in research. Among Latina research participants, providing a summary of study results could enhance participation in research. We assess Latina breast cancer survivors’ reactions to receiving study results and their attitudes about participating in future studies. For this cross-sectional survey study, all women who had participated in two behavioral randomized controlled trials (RCTs) were mailed a letter summarizing the study results (using written and graphic formats) and a questionnaire assessing problems and understanding the results, importance of sharing results, willingness to participate in future studies, and format preferences for receiving the results. A postage-paid envelope for returning the completed questionnaire was included. Logistic regression examined the associations of age, education, and rural/urban residence on format preferences and willingness to participate. The survey sample consisted of 304 low-income, predominantly Spanish-speaking Latina breast cancer survivors (151 from urban and 153 from rural communities) who had participated in two RCTs testing a stress management program designed for Latina breast cancer survivors. Ninety-two women returned the questionnaires (30.3%). Most of the women (91.1%) indicated that they had no trouble understanding the results of the study, and 97% agreed that it is very/extremely important for researchers to share the study result with the participants. The majority (60.2%) reported that receiving the results increased their willingness to participate in future studies. About half (51.7%) did not have a format preference, 37.4% preferred written summaries, and 10.9% preferred graphs. This study is an important first step to understanding the impact of returning study results among a population that is underrepresented in research. Returning the results of studies and understanding the impact of doing so is consistent with maintaining community involvement in all phases of research. The findings suggest that sharing aggregate research results in simple language yields few problems in participants’ understanding of the results and is viewed as important by participants. ClinicalTrials.govNCT02931552 Date registered: October 13, 2016 and NCT01383174 Date registered: June 28, 2011. The online version contains supplementary material available at 10.1186/s13063-021-05945-8.
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DOI：
10.1038/gim.2011.62
发表时间：
2012-04
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
DOI：
10.3390/ijerph15102091
发表时间：
2018-10-01
影响因子：
--
作者：
Echeverri, Margarita;Anderson, David;Serrano, Friar Sergio A.
通讯作者：
Serrano, Friar Sergio A.
DOI：
10.1007/s13187-017-1202-y
发表时间：
2018-08
期刊：
Journal of cancer education : the official journal of the American Association for Cancer Education
影响因子：
--
作者：
Nápoles AM;Santoyo-Olsson J;Stewart AL;Ortiz C;García-Jímenez M
通讯作者：
García-Jímenez M
影响因子：
12.7
作者：
Nápoles AM;Ortíz C;Santoyo-Olsson J;Stewart AL;Gregorich S;Lee HE;Durón Y;McGuire P;Luce J
通讯作者：
Luce J
影响因子：
3.2
作者：
Lackland, Daniel T.;Sims-Robinson, Catrina;Voeks, Jenifer H.
通讯作者：
Voeks, Jenifer H.