Hilliard Florence, Horan Holly, Zgierska Aleksandra E, Edwards Renee C
Waisman Center, University of Wisconsin-Madison, USA.
Department of Obstetrics & Gynecology, University of Alabama, Birmingham, USA.
Dev Cogn Neurosci. 2025 Jan;71:101495. doi: 10.1016/j.dcn.2024.101495. Epub 2024 Dec 17.
The HEALthy Brain and Child Development (HBCD) Study, a multi-site prospective longitudinal cohort study, will examine human brain, cognitive, behavioral, social, and emotional development beginning prenatally and planned through early childhood. The goal is to recruit over 7000 caregiver-child dyads across the United States, with 25 % of the study population comprising children exposed in utero to substances to better understanding the effects of prenatal substance exposure on fetal and child development. However, barriers of mistrust for pregnant persons who are substance involved can create challenges to recruiting and retaining this population. The HBCD Study is utilizing a novel approach in research, the inclusion of support professionals (i.e. study navigators) as research team members to boost recruitment, engagement, and retention in this population and other marginalized and underrepresented groups. This article describes the conceptualization and early implementation of a support model utilizing certified peer support specialists, and the evolution to a broader study navigator model (SNM). Core skills, training, and support necessary for integrating such support professionals onto the research team are outlined. A reflection on challenges and next steps describes how the early implementation of the SNM encourages a paradigm shift in longitudinal research that humanizes and centers the participants.
健康大脑与儿童发育(HBCD)研究是一项多地点前瞻性纵向队列研究,将从产前开始并计划持续到幼儿期,对人类大脑、认知、行为、社会和情感发展进行研究。目标是在美国招募7000多个照顾者-儿童二元组,其中25%的研究人群为子宫内接触过物质的儿童,以便更好地了解产前物质暴露对胎儿和儿童发育的影响。然而,对于涉及物质使用的孕妇的不信任障碍可能给招募和留住这一人群带来挑战。HBCD研究正在采用一种新颖的研究方法,即纳入支持专业人员(即研究导航员)作为研究团队成员,以促进该人群以及其他边缘化和代表性不足群体的招募、参与和留存。本文描述了利用认证同伴支持专家的支持模式的概念化和早期实施,以及向更广泛的研究导航员模式(SNM)的演变。概述了将此类支持专业人员纳入研究团队所需的核心技能、培训和支持。对挑战和下一步措施的反思描述了SNM的早期实施如何鼓励纵向研究中的范式转变,使参与者人性化并以参与者为中心。