Steps to Reduce Opioid-Related Stigma in Pediatric Care
“There is no population met with more scorn or derision than a mother with opioid use disorder [OUD] who has a young child,” says Eileen Costello, MD, FAAP, Chief of Ambulatory Pediatrics at Boston Medical Center.
Opioid-related deaths among women of reproductive age have rapidly increased in recent years, as have OUD among pregnant women and births of opioid-exposed newborns. Improving outcomes for moms and babies requires comprehensive treatment that continues during the postpartum period. However, stigma has made it harder for mothers to get the support they need and ultimately heightened the consequences of the opioid epidemic on maternal and child health outcomes.
Stigma increases the feelings of guilt and shame experienced by mothers exposed to opioids, leaving already vulnerable mothers feeling isolated from supports, explains Sarah Bagley, MD, FAAP, Assistant Professor of Medicine and Pediatrics at Boston University School of Medicine. And while the American Academy of Pediatrics (AAP) recommends that all pregnant women and new mothers should have access to comprehensive care that includes medication to treat opioid use disorder (OUD), mothers may stop treatment because they fear being separated from their child. This is particularly concerning for new mothers who have the highest risk of overdose deaths, because studies show that pharmacotherapy is protective against overdose during the postpartum period.
Supporting the mother-infant dyad affected by prenatal opioid exposure starts with reducing stigma.
In a recent webinar from the AAP program, Maternal-Infant Health and Opioid Use program, supported by a Cooperative Agreement funded by the Centers for Disease Control and Prevention (CDC), Bagley and Costello shared strategies pediatric providers can use to reduce stigma and improve care for families affected by the opioid epidemic. Teams from the National Network of Perinatal Quality Collaboratives (NNPQC), a national initiative funded by the CDC, attended the webinar to help inform their quality improvement efforts aimed at improving care for mothers with OUD and babies born with neonatal abstinence syndrome. As the NNPQC national coordinating center, NICHQ is eager to help spread and scale the strategies shared to a broader audience. Below, we’ve summarized some of the key advice given by Bagley and Costello. You can also watch the full webinar here, on the AAP YouTube channel.
Remember that words matter
“Studies show that language matters and makes a difference,” says Bagley. A study comparing the terms ‘substance abuser’ vs. ‘substance use disorder’ showed that using the former perpetuated stigmatizing attitudes, “even among highly trained mental health providers.” Destigmatizing language can reduce provider bias and make mothers feel more comfortable and supported.
Steps for destigmatizing language include:
- Prioritize person-first language that acknowledges the mother first, rather than the condition (e.g., a mother with substance use disorder vs. addict).
- Use words and metaphors that describe substance use disorder/opioid use disorder as a chronic condition similar to diabetes or heart disease
- Use clinical terms like ‘positive toxicology result’ instead of ‘clean/dirty urine’
- Use positive reinforcement phrases that communicate empathy and include the idea of support. Don’t use expressions like ‘You use, you lose’ that shift the blame to the person with OUD.
- Consider using terms such as ‘infant/baby with NAS’ or ‘infant/baby opioid-exposed’. Don’t use ‘addicted baby’, which is medically inaccurate and stigmatizing
Name the elephant in the room
Pediatric providers may feel uncomfortable talking to mothers about OUD,. However, avoiding the conversation rarely has the intended effect, explains Costello. “It is the elephant in the room. And if you don’t name it and let them know you’re on their team and trying to support their recovery, then you are missing out on a huge opportunity.”
Costello encourages building trust and being honest with mothers about what you know and positioning yourself as an ally. Explain that you have reviewed their prenatal history, substance use history, and mental health history, and share that your goal is to support their recovery as much as possible. It’s also important to acknowledge that stigma exists and may result in uncomfortable moments during their care (for example, it is very hard to code appropriately without using stigmatizing language).
“Try to provide as much anticipatory guidance about the process as possible, so mothers understand that we recognize the stigma in the system and the way things are set up,” says Bagley. “This shows that we care, that we’ve thought about this and that we recognize there are challenges. And that can be really important in helping mothers realize we are allies instead of another part of this stigmatizing world they have to exist in.”
“Reducing stigma and improving patient experience is essential to each NNPQC team’s approach for addressing the opioid epidemic,” says NICHQ Senior Project Director Pat Heinrich, RN, MSN, CLE. “Engaging patient and family advisors is vital to this work. By learning about individuals’ lived experiences and perspectives, we can better promote compassionate and relevant improvement strategies.”
Engage mothers in positive, validating conversations about their experiences
“During the postpartum period, it’s important to be as positive as you can be with someone who is so vulnerable and fragile, has a young infant, and may be getting a lot of unsolicited advice from their family and community,” says Costello.
Costello suggests asking questions that prompt conversations with mothers about their experience, such as: How are you doing? Who is your mental health care provider? Is there is anything we can do to support you? Positively engaging mothers with these kinds of questions shows that you genuinely care about what they’re going through and are committed to supporting them during treatment and recovery. Celebrating their successes and sympathizing with their difficulties validates their experiences, further positioning you as a member of their team.
Provide and support family-centered care
Family-centered multidisciplinary care acknowledges that mothers often encounter many barriers to treatment and recovery, and therefore require multiple levels of support (e.g., health care, drug treatment services, transportation services, child care services). By collaborating with other health and service providers—such as a mother’s health care provider and addiction provider, child protective services, and child care services—pediatric providers can ensure that there is a cocoon of support around the mother-baby pair. Learn more about providing care to families affected by substance use here.
Recognize the prevalence of trauma
Individuals with OUD have been shown to have a 42 percent increase in developing post-traumatic stress disorder (PTSD). By recognizing that many mothers will have experienced trauma, pediatric providers can be prepared to offer sensitive trauma-informed care, screen for mental health issues, and connect families with the treatment and resources they need.
Acknowledge your bias
Each of these steps first requires acknowledging individual implicit bias—unconscious bias that responds to the stereotypes and stigma surrounding opioid use. Acknowledging individual bias can help pediatric providers carefully monitor their actions and the words they use, so that all mothers receive unbiased, compassionate and just care.
“I’ve had moms that say, ‘it’s not like I got pregnant and started using heroin; I’m a heroin addict who got pregnant,’” says Costello. “And I think that’s a really important thing to remember: people don’t purposefully expose their infants; they have a substance use disorder and they become pregnant in that context.”
Supporting Indigenous Families for Improved Health Outcomes
Indigenous mothers and birthing people, fathers, partners, caregivers, and families, can speak for themselves. So, make sure seats are available – and filled – on your projects, your teams, your boards. Many projects within the MCH field have steering committees, and all should have family representation. As I hope you’ve intuited, it’s not enough to carry a message. When I think about justice, equity, diversity, and inclusion with regard to our committees, our faculty experts, or even in our improvement advisors, I have begun to ask the question: Are there people from American Indian and Alaska Native communities here?
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