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Selectively willing and conditionally able: HIV vaccine trial participation among women at "high risk" of HIV infection.有选择性地愿意且有条件地能够:艾滋病毒疫苗试验中处于艾滋病毒感染“高危”的女性的参与。
Vaccine. 2011 Aug 18;29(36):6130-5. doi: 10.1016/j.vaccine.2011.06.064. Epub 2011 Jun 23.
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HIV-infected African Americans are willing to participate in HIV treatment trials.感染艾滋病毒的非裔美国人愿意参与艾滋病毒治疗试验。
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Are racial and ethnic minorities less willing to participate in health research?少数族裔参与健康研究的意愿较低吗?
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Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think?基因研究与向生物样本库捐赠组织样本。瑞典普通公众中的潜在样本捐赠者是怎么想的?
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对于感染艾滋病毒的非洲、加勒比和黑人女性来说,提供母乳/体液样本用于研究目的的可接受程度如何?

How acceptable is it for HIV positive African, Caribbean and Black women to provide breast milk/fluid samples for research purposes?

作者信息

Kapiriri L, Tharao W, Muchenje M, Khatundi I M, Ongoiba F

机构信息

Department of Health, Aging and Society, McMaster University, 1280 Main St. W., Hamilton, ON, L8S 4M4, Canada.

Women's Health in Women's Hands, Carlton Toronto, ON, M5B 1J3, Canada.

出版信息

BMC Res Notes. 2017 Jan 3;10(1):7. doi: 10.1186/s13104-016-2326-6.

DOI:10.1186/s13104-016-2326-6
PMID:28057074
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5217306/
Abstract

BACKGROUND

The African, Caribbean and Black communities have been found to be reluctant to participate in health research in North America. This is partly attributed to historical experiences as well as their cultural beliefs. Cultural beliefs about the uses of breast milk/fluids could further hinder the participation of African, Caribbean, and Black communities in research involving the collection of breast milk/fluids samples.

METHODS

We conducted 17 in-depth interviews and three group interviews (n = 10) with HIV+ African, Caribbean and Black women living in Ontario, Canada to explore their cultural beliefs about breast milk/fluids and their acceptance of participating in research that involves the provision of breast fluid samples.

STUDY DESIGN

Qualitative study involving in-depth interviews.

RESULTS

Our respondents believed that breast milk/fluids should be used for infant feeding and for curative purposes for a variety of children's health ailments as well as ailments experienced by other family members. The cultural belief that breast milk/fluids could be used to bewitch the baby and mother and the perception that it is intrusive (equating breast milk/fluids research to DNA testing), could prevent African, Caribbean and Black women from participating in research involving the collection of breast milk/fluids. Despite these fears, some respondents expressed that they would participate if the research results would benefit them directly, for example, by finding a cure for HIV, enabling HIV+ mothers to breastfeed, or contributing to developing new drugs or vaccines for HIV. Women's recommendations to facilitate successful recruitment included giving incentives to participants, and employing a recruiter who was trustworthy, informed, and culturally sensitive.

CONCLUSION

Cultural beliefs could present barriers to recruitment and participation of Africa, Caribbean and Black communities in health research involving breast milk/fluid samples. Successful recruitment for future studies would necessitate researchers to be culturally aware of the beliefs held by African, Caribbean and Black women, to build trust, and use an appropriate recruiter. While the findings relate to breast milk/fluids, the suggested recommendations for facilitating recruitment of research participants from these communities may be useful to consider when recruiting ethnically and culturally similar participants for research involving biological samples.

摘要

背景

在北美,非洲、加勒比和黑人社区被发现不愿参与健康研究。这部分归因于历史经历以及他们的文化信仰。关于母乳/体液用途的文化信仰可能会进一步阻碍非洲、加勒比和黑人社区参与涉及收集母乳/体液样本的研究。

方法

我们对居住在加拿大安大略省的感染艾滋病毒的非洲、加勒比和黑人女性进行了17次深入访谈和3次小组访谈(n = 10),以探讨她们对母乳/体液的文化信仰以及她们对参与涉及提供母乳样本研究的接受程度。

研究设计

涉及深入访谈的定性研究。

结果

我们的受访者认为,母乳/体液应用于婴儿喂养以及治疗各种儿童健康疾病和其他家庭成员所患疾病。母乳/体液可用于蛊惑婴儿和母亲的文化信仰以及认为此类研究具有侵扰性的观念(将母乳/体液研究等同于DNA检测),可能会阻止非洲、加勒比和黑人女性参与涉及收集母乳/体液的研究。尽管存在这些担忧,但一些受访者表示,如果研究结果能直接使她们受益,例如找到治愈艾滋病毒的方法、使感染艾滋病毒的母亲能够进行母乳喂养,或有助于开发治疗艾滋病毒的新药或疫苗,她们会参与。女性提出的促进成功招募的建议包括给予参与者激励,以及聘请一位值得信赖、见多识广且具有文化敏感性的招募人员。

结论

文化信仰可能会成为非洲、加勒比和黑人社区参与涉及母乳/体液样本的健康研究的招募和参与障碍。未来研究的成功招募将要求研究人员在文化上了解非洲、加勒比和黑人女性的信仰,建立信任,并使用合适的招募人员。虽然研究结果与母乳/体液有关,但在为涉及生物样本的研究招募种族和文化背景相似的参与者时,考虑这些促进从这些社区招募研究参与者的建议可能会有所帮助。