A Patient Engagement Resource Center using Community-Based Participatory Action Research to Support Parents with Substance Use Disorders

7. Project Summary Most people with substance use disorders (SUD) are parents (i.e., pregnant, postpartum, parenting). However, parents with SUD receive little focused attention as it pertains to treatment services tailored to their needs as a parent. Becoming a parent is lifechanging regardless of the outcome of a pregnancy or birth; it can facilitate

positive change and potential for hardships and challenges. These experiences impact the perceptions of treatment utility, treatment engagement, and treatment success. Parent-centric research can identify barriers and solutions to promote treatment acceptability, accessibility, and recovery. However, most research to date

on parents with SUD has been child-focused, emphasizing the goal of improving parenting practices. This research is important, but leaves missed opportunities to consider the unique challenges and opportunities associated with the parenting role. Research and practice are steeped with the narratives of parental unfitness

and cause significant harm to parents with SUD by deterring individuals from seeking treatment. Specifically, parents with SUD may be deterred from treatment because of childcare constraints, fear of child removal, and safety concerns in clinics. They may also face discrimination in treatment if they used substances during

pregnancy, experienced pregnancy and infant loss, or child removal. Self-stigma and discrimination of parents with SUD can be addressed through translational research prioritizing parent-defined solutions to improve outcomes for this uniquely disenfranchised population. Our team is particularly poised to complete this work.

We have built a dedicated infrastructure through the NIDA P50 Center on Parenting and Opioids Data Collective and community boards. We intend to leverage these resources to establish a Patient Engagement Resource Center (PERC) for parents with SUD. Our PERC will be a national resource with the goal of

addressing disparities in treatment engagement for parents with SUD. We will achieve this goal through our specific aims. Aim 1 is to establish a lived expertise advisory panel (LEAP) of parents with SUD (n = 18) which will support capacity building and mutual decision making among individuals most impacted by our

research. Aim 2 includes Aim 2a: conduct a mixed-methods research project (N = 190 quantitative, 40 qualitative) that will identify modifiable barriers and potential solutions to SUD treatment engagement and success, as moderated by social determinants of health and parenting circumstances and Aim 2b: solicit

applications from external teams to address pilot project ideas generated by LEAP. Finally, Aim 3 is to support national engagement with our parent SUD-focused PERC by leveraging and expanding our existing Center infrastructure to support national research focused on studies to improve treatment outcomes

for parents with SUD. Our PERC will lay a path for transformative research to improve treatment acceptability, engagement, and sustained recovery for parents with SUD. Without this dedicated effort, parents with SUD will remain an afterthought in research focused on improving SUD treatment-related outcomes.