Primary Submission Category: Methodological approaches to studying public health
EMPOWER-ed by a Community Driven Process: Elevating the Research Capacity and Priorities of People with Intersectional Experiences of Substance Use and Pregnancy
Authors: Abigail A. Lee, Arielle Estes, Grace Gerdts, Nichole Nidey,
Presenting Author: Abigail A. Lee*
Background: Community-engaged research advocates for community participation throughout the research process. This study documents community-led research processes from a multi-year, multi-state community-engaged project focused on improving healthcare experiences for people who have used substances around the time of pregnancy.
Methods: In 2019, a Cincinnati-based group of women with intersectional experiences of pregnancy and substance use were recruited to partner in a community-engaged project called EMPOWER. Since then, EMPOWER expanded to a multi-state, online community and EMPOWER Moms trained in research methods and developed research priorities. To investigate their priorities, they created a survey with qualitative questions about healthcare-setting language preferences for people with substance use and pregnancy experiences. In 2024 the survey was distributed to a social media group for women with these experiences, and n=323 people responded to the survey.
A team of lived experience experts and public health experts was formed for qualitative analysis. The team trained in qualitative thematic analysis and Dedoose, co-creating a thematic codebook using deductive and inductive approaches. They established intercoder reliability using 10 survey responses and independently analyzed survey data.
Preliminary Results: EMPOWER focused on the co-leadership of EMPOWER Moms, yielding unique research questions and bringing nuance to research design and analysis. Preliminary thematic findings demonstrate that survey participants have standards about how healthcare providers address them, and they are impacted by the language used and environments cultivated by healthcare providers.
Conclusions: This community-engaged research highlights the importance of community-driven priorities and leadership throughout the process. Next steps include reporting to EMPOWER Moms for project decision making and disseminating findings to survey participants and healthcare providers.