After learning that women with substance use disorders were routinely shamed and poorly treated during the births of their babies, a CU Anschutz postdoctoral fellow sought a way to reduce provider bias and improve healthcare for these new mothers.
Karli Swenson, PhD, MPH, collected three years of anonymous provider data that demonstrated how women who use substances during pregnancy routinely receive poor treatment, ranging from rude behavior to actual medical negligence.
Swenson created a virtual training with the Colorado Perinatal Care Quality Collaborative (CPCQC) in partnership with peer recovery specialist Racquel Garcia of HardBeauty, an organization specializing in lived-experience expertise of substance use disorder. The intervention was intended to improve the care women receive – and connect them to resources for postpartum care.
Aimed at providers in labor and delivery and in the Neonatal Intensive Care Unit (NICU), the training centers on stories from women in recovery who now work as perinatal peer support advocates. Their narratives help providers understand the trauma, fear and systemic barriers that often lead patients to conceal substance use during pregnancy.
The pre-post intervention study demonstrated statistically significant improvements in response scores, indicating reduced stigma and bias toward perinatal patients with substance use disorder. Qualitative feedback also highlighted the training’s relevance and impact.
Key points:
Pregnant patients with substance use disorder frequently experience stigma and bias from healthcare providers, which negatively affects maternal and infant outcomes.
A virtual training for labor and delivery and NICU providers was developed to reduce stigma by combining clinical education with lived-experience storytelling.
The training includes trauma-informed education, legal and clinical guidance and practical tools for delivering compassionate, equitable perinatal care.
A pre-post intervention study showed statistically significant reductions in provider stigma and bias, supported by positive qualitative feedback.
Maternal death rates due to overdose have tripled in the United States since 2018. In Colorado, accidental overdose remains the second leading cause of death among pregnant and postpartum women.
Using illicit substances in pregnancy is never safe for mom or baby, but addiction is often complicated by factors such as trauma, lack of healthcare access and the fear that asking for help will be met with consequences.
The virtual training targeted healthcare providers who held stigma or bias toward pregnant patients with substance use disorder.
“We created a program for people who did not want to be there,” explained Swenson. “Racquel warned me that talks on perinatal substance use weren’t ‘bright and shiny’ – and what we’ve put together is real, raw and painful.”
“The truth is, we all have internal stigma and biases. Even those of us who work in this field. We just need to acknowledge it so we can work on it. And remember that these new moms – because of their infants – are more apt to take the services being offered. That’s one way we can work toward helping moms recover.” – Karli Swenson, PhD, MPH
More than 1,500 providers have attended the training, spending the first 45 minutes learning about substance use disorder, including the high rates of domestic violence, sexual abuse and trauma that precede perinatal substance use. Attendees also received a 10-step toolkit with guidance on everything from speaking to patients with empathy to changing the culture of naloxone administration.
“There’s a lot of education. For example, a law recently changed, and many of the obstetricians didn’t know they could legally start their patients on medication for opioid use disorder,” Swenson said.
The second part of the talk draws from the stories shared by women in recovery from substance use issues who now work as perinatal peer support advocates. Attendees were warned prior to the breakout rooms that hearing the stories could be difficult and triggering.
“Our goal in sharing these stories is to help providers understand why these women are being treated so terribly and why these patients lie,” Swenson said. “We make sure they understand the devastating circumstances that lead them to labor and delivery actively using substances.”
Related: Helping Individuals Navigate Recovery, Pregnancy and Early Parenthood
After listening to the stories, attendees had an opportunity to share. The conversations that resulted were vulnerable and complex, with providers who had experienced women in active use sharing feelings ranging from hopelessness and regret to anger and rage, Swenson said.
“One thing we communicated throughout is that it’s OK to feel these complex feelings. And then we make sure they understand that when patients with substance use present to their units, they know how to call in a peer-support doula who is specially trained to be with these patients in active labor and beyond.”
Attendees were also encouraged to ask hard questions.
“I always explain that we’d rather have you ask questions now than in three months when you have a patient who is using heroin and doesn’t speak your language,” Swenson said.
The training also tends to get emotional, Swenson said.
“The attendees who were most apprehensive or who made the most disparaging judgments seem to be the most emotional, often sharing their own experiences with losing a loved one to overdose.”
It’s not just an anecdotal observation. Qualitative feedback highlighted the training’s relevance and impact, and participants found value in incorporating the voices of lived experience.
Swenson hopes that helping providers become more aware of their stigmas and biases – and better understand the realities of perinatal substance use – can help to improve outcomes for moms and babies.
“The truth is, we all have internal stigma and biases. Even those of us who work in this field. We just need to acknowledge it so we can work on it. And remember that these new moms – because of their infants – are more apt to take the services being offered. That’s one way we can work toward helping moms recover.”