Optimizing the ethical research engagement for pregnant women living with HIV and their children
优化感染艾滋病毒的孕妇及其子女的伦理研究参与
基本信息
- 批准号:10792212
- 负责人:
- 金额:$ 28.06万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2021
- 资助国家:美国
- 起止时间:2021-04-09 至 2026-01-31
- 项目状态:未结题
- 来源:
- 关键词:Acquired Immunodeficiency SyndromeAddressAfricaAfricanAnti-Retroviral AgentsAreaBioethical IssuesBioethicsBiomedical ResearchCaringChildCommittee MembersCommunicable DiseasesCommunicationCommunication MethodsCommunity Health AidesData SecurityDatabasesDevelopmentEducational workshopElderlyEnrollmentEnsureEpidemiologyEquityEthical IssuesEthicsEthics CommitteesExposure toFoundationsFutureGoalsGuidelinesHIVHealthHealth PersonnelHumanInformation DisseminationInformed ConsentInternationalInterviewKenyaMaternal and Child HealthMissionModelingMorbidity - disease rateMothersNational Institute of Child Health and Human DevelopmentOutcomeOutcomes ResearchParticipantPoliciesPopulationPostpartum PeriodPregnant WomenProcessPublic HealthRecommendationRegimenResearchResearch ActivityResearch AssistantResearch DesignResearch Ethics CommitteesResearch PersonnelResearch Project SummariesResource-limited settingResourcesSeriesUnited States National Institutes of HealthUniversitiesVulnerable PopulationsWomanagedantenatalclinical caredesigndisabilityevidence baseexhibitionsexperienceglobal healthhealth care availabilityimprovedinsightintersectionalitymortalitynovelpeerperson centeredpoor health outcomepregnantprogramsrecruitsoundsymposium
项目摘要
PROJECT SUMMARY
Research involving pregnant women living with HIV (PWLHIV) and their children has increased in recent years
to better understand the health outcomes related to new antiretroviral regimens within the antenatal period and
outcomes related to being born to a mother living with HIV. While some insights have been reached regarding
the issues faced by these populations when engaging in research, very little is known about what potential
harms arise from their participation and their preferred method for communication of study results. Therefore,
there is a critical need for an empiric, person-centered approach to understand the ethical issues that can arise
from research involving PWLHIV and their young children due to the intersectionality of multiple vulnerabilities
within these populations. By providing more empirical evidence to inform ethical research activities, research
programs will gain critical guidance on how to engage this population in future studies. The proposed activities
will occur within the context of our ongoing Tabiri Study (R01HD104552), which is currently enrolling 1000
Kenyan women (half of whom live with HIV) who are pregnant or immediately post-partum and following them
and their children for 24 months. The specific objectives of this application are to: (1) provide an evidentiary
basis to guide the ethical and equitable conduct of biomedical research involving PWLHIV and their young chil-
dren, and (2) create and disseminate a stakeholder-informed bioethics toolkit to support investigators engaging
in research with similar populations. Within the first aim, we will evaluate perspectives on research participation
from key stakeholders, including PWLHIV who are actively enrolled in ongoing maternal-child health outcomes
research in Kenya. To do this, we will recruit key stakeholders, including PWLHIV and their partners, village
elders, healthcare workers, research assistants, community health workers, and research ethics committee
members, for in-depth, qualitative interviews to understand a myriad of topics related to research participation.
Within the second aim, we will create and disseminate a bioethical toolkit for engaging PWLHIV and their chil-
dren in research. The results from the key stakeholder interviews from the first part of our study will inform the
creation of ethical guidelines for research engaging PWLHIV and their young children. We will then utilize a
series of participatory design workshops, including PWLHIV, university ethics committee members, and key
stakeholders, guided by an international ethics framework, to develop a bioethical toolkit. The toolkit will outline
key aspects of research, from study design to dissemination of results. We will then disseminate the toolkit us-
ing three strategies: (1) a local symposium, inviting ethics committee members from across Kenya; (2) the re-
search networks of the International epidemiological Databases to Evaluate AIDS Regional Consortium and
the Academic Model Providing Access to Healthcare (AMPATH) consortium; and (3) an exhibition booth at an
international HIV conference. Through these aims, we will gain critical insights to develop the evidence-based
resources needed to optimize stakeholder-engaged, ethical research focused on PWLHIV and their children.
项目总结
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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Megan Song McHenry其他文献
Megan Song McHenry的其他文献
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{{ truncateString('Megan Song McHenry', 18)}}的其他基金
Advancing the science of neurocognitive physiology in adolescents living with HIV
推进青少年艾滋病毒感染者的神经认知生理学科学
- 批准号:
10453598 - 财政年份:2021
- 资助金额:
$ 28.06万 - 项目类别:
Advancing the science of neurocognitive physiology in adolescents living with HIV
推进青少年艾滋病毒感染者的神经认知生理学科学
- 批准号:
10299869 - 财政年份:2021
- 资助金额:
$ 28.06万 - 项目类别:
Predicting neurodevelopmental risk in children born to mothers living with HIV in Kenya
预测肯尼亚艾滋病毒感染者母亲所生儿童的神经发育风险
- 批准号:
10557155 - 财政年份:2021
- 资助金额:
$ 28.06万 - 项目类别:
Predicting neurodevelopmental risk in children born to mothers living with HIV in Kenya
预测肯尼亚艾滋病毒感染者母亲所生儿童的神经发育风险
- 批准号:
10161373 - 财政年份:2021
- 资助金额:
$ 28.06万 - 项目类别:
Predicting neurodevelopmental risk in children born to mothers living with HIV in Kenya
预测肯尼亚艾滋病毒感染者母亲所生儿童的神经发育风险
- 批准号:
10390434 - 财政年份:2021
- 资助金额:
$ 28.06万 - 项目类别:
Neurodevelopmental screening in children born to HIV-infected mothers in Kenya
肯尼亚艾滋病毒感染母亲所生儿童的神经发育筛查
- 批准号:
9789944 - 财政年份:2018
- 资助金额:
$ 28.06万 - 项目类别:
Neurodevelopmental screening in children born to HIV-infected mothers in Kenya
肯尼亚艾滋病毒感染母亲所生儿童的神经发育筛查
- 批准号:
10006897 - 财政年份:2018
- 资助金额:
$ 28.06万 - 项目类别:
Neurodevelopmental screening in children born to HIV-infected mothers in Kenya
肯尼亚艾滋病毒感染母亲所生儿童的神经发育筛查
- 批准号:
10247480 - 财政年份:2018
- 资助金额:
$ 28.06万 - 项目类别:
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