Nummelin Julia R, Brookes Jama J, Bishop Raegan A, Whitted Calandra G, Dash Chiranjeev, Koehly Laura M
Social Network Methods Section, National Human Genome Research Institute, Bethesda, MD, USA.
Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Building 31, Rm B1B54, Bethesda, MD, 20892-2073, USA.
BMC Public Health. 2025 Feb 27;25(1):805. doi: 10.1186/s12889-025-21853-x.
Black Americans are disproportionately affected by a number of common complex conditions, such as cancer. Genomic tools like Family Health History (FHH) can be useful in guiding screening and behavior based on a person's risk for these conditions. Factors such as family communication and societal norms can influence individuals' knowledge of their FHH. Men, particularly Black men, are less likely than women to know FHH. Further, there is limited understanding of Black men's participation in FHH dissemination, as they are often underrepresented in biomedical research. Understanding Black men's perceptions of FHH sharing may help guide effective recruitment and retention efforts in future genomic research providing an opportunity to investigate their lack of engagement in FHH conversations.
The purpose of this paper was two-fold: (1) Detail methods that were effective in recruiting and retaining Black men in community-based genomic research interventions, and (2) Evaluate the factors influencing men's participation in FHH gathering and sharing.
This one-year, mixed methods study combined qualitative community-based education programs (n = 12) and semi-structured interviews (n = 27), with quantitative survey assessing participant characteristics and sex differences (n = 50). Transcripts from the program were coded by separate study team members for themes and provided insights into study participants' perceptions about FHH and their involvement in gathering and disseminating this information within their family.
Challenges in recruiting and retaining Black men prompted the study team to pivot recruitment strategies, including partnering with community-based organizations focused on men's health, growing the research team to include Black men, adapting to potential participants' time constraints, and creating opportunities to build trust. A thematic analysis of community education sessions and interviews identified five themes, including social role expectations and perceived family disconnectedness, that provide insights into potential barriers to participation. Qualitative data from participants suggests that beliefs and perceptions about the roles Black men play in health discussions within the family may influence their involvement, while community programs were seen as encouraging men to engage in these conversations.
These lessons learned provide valuable perspectives on potential barriers to participation, which may inform future strategies that aim to engage Black men in family-oriented community education programs and genomic research.
美国黑人在一些常见的复杂疾病(如癌症)方面受到的影响尤为严重。像家族健康史(FHH)这样的基因组工具对于根据个人患这些疾病的风险来指导筛查和行为可能很有用。家庭沟通和社会规范等因素会影响个人对其家族健康史的了解。男性,尤其是黑人男性,比女性了解家族健康史的可能性更小。此外,由于黑人男性在生物医学研究中的代表性往往不足,人们对他们参与家族健康史传播的情况了解有限。了解黑人男性对分享家族健康史的看法可能有助于指导未来基因组研究中的有效招募和留存工作,从而有机会调查他们不参与家族健康史讨论的原因。
本文的目的有两个:(1)详细介绍在基于社区的基因组研究干预中有效招募和留存黑人男性的方法,(2)评估影响男性参与家族健康史收集和分享的因素。
这项为期一年的混合方法研究结合了基于社区的定性教育项目(n = 12)和半结构化访谈(n = 27),并通过定量调查评估参与者特征和性别差异(n = 50)。该项目的访谈记录由不同的研究团队成员进行主题编码,以深入了解研究参与者对家族健康史的看法以及他们在家庭中收集和传播这些信息的参与情况。
招募和留存黑人男性面临的挑战促使研究团队调整招募策略,包括与专注于男性健康的社区组织合作、扩大研究团队以纳入黑人男性、适应潜在参与者的时间限制以及创造建立信任的机会。对社区教育课程和访谈的主题分析确定了五个主题,包括社会角色期望和感知到的家庭疏离感,这些主题为参与的潜在障碍提供了见解。参与者的定性数据表明,关于黑人男性在家庭健康讨论中所扮演角色的信念和看法可能会影响他们的参与,而社区项目被视为鼓励男性参与这些对话。
这些经验教训为参与的潜在障碍提供了有价值的观点,这可能为未来旨在让黑人男性参与以家庭为导向的社区教育项目和基因组研究的策略提供参考。