Ten women who had entered treatment for OUD during pregnancy and remained engaged in treatment during the postpartum period were interviewed between 2 weeks and 1 year after delivery. Participants had a mean age of 28 years, identified their race/ethnicity as non-Hispanic White or multiracial (White/Native American), and had a diagnosis of OUD. Five had initiated prenatal care during the first trimester, the remainder during the second or third trimesters. Half were first time mothers. All had been referred to the treatment program by prenatal providers and continued to receive care in the same obstetric clinic. All participants were receiving buprenorphine for the treatment of OUD.
Engagement in care before pregnancy
Before becoming pregnant, participants experienced barriers which affected access to substance use treatment. The majority lacked insurance coverage before becoming pregnant, and primarily used the emergency department for medical care. Participants reported that they were unable to enter treatment due to long waiting lists at OUD treatment programs, lack of insurance, and transportation problems. These barriers felt insurmountable, leaving women with little choice but to continue using illegally obtained opioids. One participant reported unsuccessfully contacting multiple treatment providers: “I’d tried calling … maybe a year, 9 months to a year before [becoming pregnant], only to be told: ‘We have a waiting list,’ or ‘Your insurance doesn’t cover,’ and it just seemed like there were no avenues” [Participant 4].
Several participants attended intake appointments at opioid treatment programs which required cash payments, but were unable to afford the cost of attendance or medication. Therefore “at the time, it was more reasonable to keep using because it was cheaper” (Participant 8). Some had not sought treatment prior to pregnancy. However, with diagnosis of pregnancy, women became eligible for Medicaid and were immediately able to cover the cost of treatment attendance and medication for OUD.
Pregnancy as change point
At the individual level, discovering that they were pregnant caused a fundamental shift in women’s motivation to seek treatment. The diagnosis of pregnancy was perceived as the inflection point. According to one participant: “It just felt like a perfect opportunity to stop … to better myself and to do better and just be the person that I know I could be … it felt kinda like a wakeup call. Like, here’s your opportunity” (Participant 4). Another said: “Just finding out that I was pregnant did give me hope. It made me feel like, wow, I really have – not just for myself- but I have a reason to stop” (Participant 7). Many described an abrupt change in focus from their own needs to concern about risk to the fetus. For example, one woman described her resolve to avoid withdrawal symptoms which could cause fetal harm: “Yes, she changed everything. And I had two kids, but … it’s different when they’re out and you know what you’re doing. I mean, it is hurting them, but not physically hurting them. But then to have a baby inside of you, everything you do hurts them” (Participant 5).
Women also described a shift in their sense of agency and self-efficacy, resulting in efforts to self-manage substance use while they sought treatment. Women did their best to reduce harm based on available knowledge, utilizing social networks and web-based resources to obtain information. After her pregnancy was diagnosed during an emergency room visit, Participant 7 described how: “Me and my boyfriend had done our own research after leaving the hospital. Immediately we were on the phone, Googling what to do with an addiction problem and being pregnant.”
I found out I was pregnant. I continued using Percocets [oxycodone] for about a month. And then, from my prenatal care and my people on the street and friends, I heard about Suboxone [buprenorphine/naloxone]. So, I took myself off of the Percocets, switched myself to the Suboxone [buprenorphine/naloxone]... and made it work until I could get in … So, I guess I tried to play my own doctor and tried to do what was right. (Participant 1)
Her experience was not unique. Based on information from associates or the internet, other participants also reported obtaining the treatment medication buprenorphine illegally, believing this was safest during pregnancy.
All participants confronted the need to disclose substance use to maternity care providers in order to access treatment. While most chose to do this verbally, one intentionally provided a urine sample containing non-prescribed buprenorphine as a way to inform her midwife. “I told [the midwife] right away. I had some in my system, and I actually did it on purpose … She goes, ‘I found Subutex [buprenorphine] in your system.’ I said, ‘I know. I take that for a reason’” (Participant 2).
Disclosure was an intense and emotional moment for most participants, who feared stigma, legal consequences, and child protective services involvement. Nevertheless, motivated by the desire to prevent harm, women gathered courage: “It’s like, oh my God, I have to go in there and tell [the clinician] I was a drug addict,” (Participant 6). Some described a sense of relief afterwards: “I just felt a … rush and just was like, I have to say it. And I kind of felt, like an out of body experience saying it. Then afterwards I was like, ‘Oh my’. And then I was like, ‘I can’t take it back!’” (Participant 4). Only Participant 9 denied that this conversation with providers was challenging: “I’m a really open person. And I find that when I’m more open with the doctors, they do what needs to be done.”
Responses from maternity care providers were varied, ranging from perceived rejection through support. Although some women initially sought maternity care from midwives or at community hospitals where they had delivered other children, they were immediately referred to a high-risk obstetric service because of their substance use. This caused a loss of pre-existing relationships with trusted local providers.
The nurse was like, ‘Are you using drugs?’ and I was like ‘Yeah, I’m using opiates’ … And then they were like, ‘Oh, well, we don’t really have the resources to deal’, it kind of made me feel like I was, like ‘Oh my God, we can’t deal with you’ type. So it made me feel like a disease. Like a contagious disease. (Participant 4).
Other providers were unexpectedly supportive and helpful, providing reassurance and immediate referrals to treatment.
And [the maternity provider] was like, ‘Okay, let’s get you some help’. And I’m like, ‘There’s people out there that would actually want to do that?’ You know? And she’s like, ‘Um, yeah! You know, you’re pregnant and you guys get like first priority. And so you’ll get in there in two weeks.’ And I was just like, ‘Two weeks?’ I was expecting a number more like two months. (Participant 8).
This uncertainty surrounding provider response served both as a barrier to seeking care, and an unexpected moment of growth for participants who asked for help and received it.
Throughout pregnancy and treatment engagement, participants described an evolution of self-efficacy with regards to managing OUD. Participants acknowledged an overall shift in their relationship to substance use. Upon learning she was pregnant, Participant 7 told her partner: “Things need to change because this is not the way we can live. We’re living very, very harmfully … We gotta start reachin’ out. We gotta start being honest. We can’t keep hiding this. So, from then on we decided this was it.” While many women initially felt shame (i.e. Participant 4, above), some also developed self-acceptance and a new sense of competence with regards to recovery:
But now I feel like I beat my addiction, I am bettering myself. So I feel … You know, I just feel like a lifetime ago. I feel like, was that really me? But I’m so proud of myself, you know, that one day in the hospital with the OB to say, ‘Yes. Yes I do. And please get me help.’ (Participant 4)
Another noted: “You know, people fall and make mistakes. But you can bounce back. … .. it’s not the end of the world to make a mistake, but how you react afterwards and pick yourself up is the important part” (Participant 3). This self-efficacy reinforced women’s efforts to engage with and remain in treatment during and after pregnancy.
Agency and self-care
Increasing self-efficacy also contributed to women’s ability to engage in self-care, from managing difficult relationships, through overcoming logistical barriers and accessing needed resources. As confidence grew, some made consequential decisions about social relationships with partners, family members, and friends. This often involved losing connections with former associates when they entered treatment. “Because we didn’t have drugs anymore, nobody wanted to help. You know, all those favors we did, they didn’t matter anymore” (Participant 7). Others described how a shift in motivation and renewed commitment to self-care led to decisions about ending non-supportive relationships, including with partners who continued using drugs. Although this sometimes resulted in loss of transportation or housing, participants identified these decisions as necessary for success. Participant 7 described her need to avoid family members who disapproved of her engagement in a program which used medication to treat OUD during pregnancy. “I’m not ready to see my parents now that I’m clean. Cause I don’t want them to jeopardize this!” Another recounted ending her relationship with the father of her children, who pressured her to share her treatment medication and caused her prescription to run out early.
It would be hard for me because I’d be short at the end … and then it’d be in my head, like ‘What’s more important? Trying to make sure I have enough for me and the baby, or for this grown-ass man that’s not getting help and crying to me like a baby?’ We actually ended up splitting up because it got to the point that I said, ‘I’m done … I’m not supporting your habit. And you need to get help. If I can get help, why can’t you?’ So I left him. (Participant 4)
Concern for her pregnancy became a catalyst to allow her to care for herself.
While some participants ended non-supportive relationships, others chose to accept support from friends and family. Participant 8 described receiving unexpected assistance and encouragement from her mother-in-law. “I was lucky that my husband’s mother has been very supportive throughout the whole thing. She would help me do research and stuff. And she was one of those people you would think wouldn’t be supportive, based on who she is as a person and amongst society. But she turned out to actually be my biggest advocate.” For some, family and friends provided both emotional support and assistance for navigating barriers to recovery. Participant 10 explained that her boyfriend’s support was instrumental. “[My boyfriend] just always made me feel very comfortable with whatever I was doing, like ‘We’ll figure it out.’ Like when I stopped working … I was like eight months pregnancy, crying ‘cause they [coworkers] were just ridiculous, and he’s like, ‘We’re done … If I work a bunch of overtime, we’ll figure it out.’”
Participants also developed effectiveness in overcoming logistical challenges. Attending appointments for both prenatal care and substance use treatment involved managing transportation, time, and financial constraints. This required organizational skills. “It was just like appointment after appointment. My weeks were packed full … I worked two jobs … So I was a busy girl. I got a big planner. Jotting everything down, oh my God, it’s packed full still with her appointments and mine!” (Participant 2). Another took steps to rearrange her work schedule so she could attend weekly treatment appointments. “I have to go in at 4:30 am because I’m calling out [to go to treatment]” (Participant 6). Navigating treatment successfully required developing new skills and persistence. “I had to change myself first. I had to say, ‘No, don’t set on [delay] this. You need to get it done, you need to do this’” (Participant 2).
Caring for others
Improved capacity for self-care contributed to the desire to care for others. Attending a substance use treatment group with other women was described by several participants as a significant source of support and information, enhancing confidence about childbirth and the care of a newborn likely to experience opioid withdrawal. Participant 2 explained: “I was worried about the birth. Group really helped with that because there were a lot of girls who had just recently had their babies, and they shared their experience with us and it really kind of eased your mind that your baby was gonna be okay.” Others described how group members provided mentorship to each other: “We all bounce things off of each other, like, we’re giving each other ideas and we’re giving each other praise” (Participant 10). Women linked their own recovery to their support for one another: “It just seemed like a buddy system … And it’s nice to feel like you’re paying it forward. Like, this is where I was, I’ve been there, don’t feel bad about yourself, because you’re doing the best you can” (Participant 4). Peers also provided a sense of accountability: “If you do use [drugs], and then you gotta come tell the group and you feel bad and you don’t want to do that, so then that stops you” (Participant 9). Though most were unequivocally positive about the support of peers, two participants worried about being judged by other group members. Participant 10 perceived some group members as being “very judgmental of each other,” although Participant 8 felt that her anxiety about being judged decreased with time. “There’s nothing like an intimate setting and having to be honest and speak publicly … I think I still start feeling warm and get red in the face when it’s my turn to talk, but now that I’m one of those people that have been here awhile … I don’t feel quite so looked at or judged...” (Participant 8).
Participants also reached out to women in their home communities, bringing them to the treatment program, and helping them establish care. Women described feeling fortunate to be in treatment and recovery: “I’m thankful that I’m here, and at this point in time, I’m happy where I am, I don’t want to change a thing. But I do, in a sense, wish that I could leave so somebody else could come in, and have a spot and have the help that they need. But me being selfish, I don’t want to leave” (Participant 1). Another explained that she agreed to be interviewed in order to help others: “That’s why this research is so important. Because … there’s just so many things that need to be changed and done.” (Participant 7).