Mothers and Mentors: Exploring Perinatal Addiction and Recovery Through Digital Storytelling

Theoretical Framework

Heaney and Israel (2008) described a model in which strong social support and social networks positively influence health behaviors both directly and indirectly by increasing coping and community resources; decreasing stress; and improving physical, mental, and social health. Applied to perinatal SUD, peer mentors with lived experience may provide critical social support that influences each of these domains leading to healthy behaviors, including reduced illicit drug use, adherence to medication-assisted treatment for SUD, attendance at prenatal and postpartum check-ups, and utilization of mental health resources. Digital storytelling provides a supportive process (Gubrium et al., 2016) in which peer mentors can collectively reflect upon their experiences of mentoring other women through individual (script writing, image collection, video editing) and group (story circle, story screening) activities to understand and articulate the impact of peer mentoring on the health behaviors of their mentees.

Participants and Setting

We conducted our study in a rural county in Massachusetts with high rates of opioid use and NAS. In this county, as a measure to improve care for pregnant women with SUD and their neonates, a formal peer-mentoring program for pregnant women with SUD was developed in a collaborative effort by local agencies invested in the well-being of women and children. Peer mentors in recovery with lived experience of substance use in pregnancy were paired with other pregnant women with active SUD. The peer mentors provided support and advocacy to their mentees throughout pregnancy, birth, and postpartum. The formal peer-mentoring program ran for 6 months, from June through December 2015, until it was abruptly closed by the state-funding agency. For our study, we aimed to learn from peer mentors involved in the formal peer-mentoring program, which at time of study recruitment, had been closed for less than 2 months.

Recruitment and Retention

Peer mentors were recruited by word-of-mouth with assistance from one peer mentor who served as a key informant. The key informant notified other peer mentors about the study and gave them the contact information for the project principal investigator (PI). The PI either spoke on the phone or met in person with potential participants to provide an overview of the study. To be eligible to participate, women had to (a) be in recovery from SUD, (b) be at the age 18 years or above and speak English, (c) have lived experience of active SUD during pregnancy, and (d) have served as a peer mentor for pregnant women with active SUD, as part of the formal peer-mentoring program. Participants received a US$100 gift card for completing each day of a 3-day workshop and a US$20 gift card for completing a follow-up interview. We considered our participants to be experts on the study topic and based remuneration on what constituted a living wage for the 25 hours of study participation.

Data Collection

Data Analysis

Digital stories were analyzed using intertextual transcripts (Gubrium & Turner, 2011). Audio-recordings of the story circle, story screening, and individual interviews were professionally transcribed after the interviews were complete. Using a constructivist grounded theory approach, the transcript data were separately coded by the first and second author (Charmaz, 2014). In open coding, the analysts read through the entire transcripts while writing interpretive memos in response to the data. As new codes emerged, previously analyzed transcripts were re-explored for these codes (Thorne, 2000) and the analysts independently created lists of categories within the data. The two coders met multiple times during the analytic process to compare codes and categories, and discuss patterns and preliminary themes. To ensure rigor of the analysis and interpretation, this process continued until a final list of themes was negotiated and consensus was reached (Sandelowski & Barroso, 2007). Trustworthiness was further established through member checking (Lincoln & Guba, 1985), which helped confirm accuracy of the findings.

Addiction in Pregnancy

The peer mentors discussed their own past experiences of addiction in pregnancy, including their sense of shame, stigma, fear, and isolation. Being pregnant and addicted, they felt ashamed knowing their babies were exposed to substances, a common theme among women dealing with addiction during pregnancy and parenting (Cleveland, Bonugli, & McGlothen, 2016). One study participant reflected in her interview, “To be an addicted mother, the guilt and shame that goes on top of that, pretty much we want to die anyway. We are so ashamed and embarrassed and people look at us with disgust and disdain.” Each of the mentors revealed this common sense of shame, experienced in the past during pregnancy.

In addition to the “looks” they received, participants felt stigmatized by health care providers during and after pregnancy, which may have contributed to their self-imposed shame (Cleveland et al., 2016). In the workshop story circle, one of the participants talked about feeling shamed by the staff in the neonatal intensive care unit (NICU) who “wouldn’t listen to me because I was a junkie mom.” Field notes from Day 2 of the workshop record the backstory: she wanted to breastfeed and did not want her daughter to have a pacifier. Despite expressing this, she repeatedly saw the NICU staff feeding her baby formula from a bottle and giving her a pacifier, rather than treating her as a mother capable of making the best decisions for her daughter and honoring those decisions—sentiments commonly described as important by mothers of infants in the NICU (Aagaard & Hall, 2008) yet frequently not experienced by mothers with SUD (Cleveland & Bonugli, 2014).

The participants differentiated stigma of addiction in pregnancy from general stigma around addiction. They experienced pregnancy-related stigma even from others in the addiction community. One of the participants elaborated on this in her interview, saying

[Pregnant] women in the community, they get treated differently by the community, they get stigmatized in meetings, oh “they’re nodding off, they are not clean,” this and that. The stigma just gets—their disease of addiction gets compounded with the stigma and the expectations put upon them by living in certain houses or not having available resources to accommodate pregnancy.

The stigma of addiction in pregnancy came coupled with fear. A participant described in her interview that

[W]hen you are pregnant and using some sort of substance, there is a ton of stigma around that and there are a ton of fears, you know, fear that [the government agency] is going to take your baby away, fear that your baby is not going to be healthy, fear, you know, you’re still not going to be able to get clean ever, fear that you’re going to be alone, or have to hold this secret.

This participant’s fears were exacerbated by her experiences with previous pregnancies, which for unknown reasons had all ended in miscarriage, as well as her experiences with health care providers during her pregnancy with her daughter. Her daughter was born with a known anomaly diagnosed during pregnancy and unrelated to her own active drug use; in her digital story, she describes being told that her daughter would not live beyond 2 years. Although she feared for her daughter’s health, she also felt unsupported in her goal of getting into recovery (Workshop Day 2 debrief fieldnotes), a goal she needed to achieve to retain custody. When her baby was born, she had only moments with her daughter before she was taken to surgery and then the NICU. In her digital story, she says, “The first time I laid eyes on her, I knew that I would never use again” and the viewer sees a close-up, black and white photo of the faces of the participant and her newborn daughter, gazing at each other, their eyes inches apart. The participant is smiling, with her right thumb touching her daughter’s left hand.

Despite wanting to stop using drugs, the participants noted that they did not feel capable of quitting drugs on their own and did not have adequate social or institutional support to help them toward that goal. In her digital story, the participant who had experienced multiple miscarriages states that during her pregnancy, “I felt alone and scared because I didn’t miscarry and all of sudden I was going to be a mother. I really wanted to be clean and sober but I didn’t think I could do it.” In another digital story, a participant says, “I was waiting for weeks to get into the methadone clinic. I just wanted to save my baby’s life.” The viewer sees a photo of this participant in her third trimester of pregnancy, smiling, with her right hand atop her pregnant abdomen and visible track marks on her arm. The struggle between wanting to end their drug use while lacking support contributed to a sense of isolation and hopelessness for the participants. Conflicting desires—for being a good mother and for their drug of choice—carried the threat of forced abandonment of their child through government agency intervention. Ultimately, each of the peer mentors experienced some degree of child custody loss, either because the state took their children away, or because other family members took on primary caregiving responsibility. One participant describes the experience in her digital story, saying that shortly after her second child was born, the government agency was “at the door with the police, taking our babies away. I was so deep in my addiction that I really believed I was a good mother, I didn’t think I was doing anything wrong.”

The peer mentors deeply connected their own experiences of shame, stigma, fear, and isolation in pregnancy with those of their pregnant mentees. They empathetically wanted the experience to be different for these women, in a sense reclaiming a mothering role with their mentees as they provided continuous support despite their mentees’ own struggles with and relapse into addiction. For the mentors, story sharing was an important part of helping to facilitate a better experience for their mentees. One participant noted in her digital story that “sharing allows us to let go of the shame, work on the guilt, and focus on building a stronger ‘us.’” Her use of the word “us” may signal a sense of solidarity felt with fellow mentors and mentees, which was expanded upon in the digital storytelling workshop through shared experience, connection through reflection, and then active storytelling to make sense of one’s experiences.

Path to Recovery

Each of the mentors had an individual journey toward recovery but many of their recovery-related beliefs are common to the foundational ideas of the 12-step Narcotics Anonymous (NA) program (Narcotics Anonymous, 2008). In her digital story, one participant said of working toward recovery, “It’s an inside job. We have to get all of that junk out of us, and then the task of trying to replace it with the beautiful begins. A transformation of sorts.” Along with these words, the viewer sees on screen a photo of a disk of a single flower, used to represent the individual woman struggling with addiction. As the participant speaks of the inside job that leads to self-transformation, the image very slowly zooms out revealing the beauty of pink petals surrounding the flower disk.

This participant’s sentiment was echoed in all of the participants’ interviews. To be successful in recovery, the women had to be active participants in the process and do the “inside” work of reconciling the past, in NA parlance, meaning they had to remember the past and recognize that they could not change it, but not allow it to contaminate the present. The phrase “inside job” was used by several of the participants in their interviews and digital stories. This phrase is commonly found in literature about recovery from substance abuse (Ehler, 2000) and was described by one participant as developing “morals and values and ethics and love and compassion, not just for self, but for others.” To do this inside work, another participant noted in her interview “you really have to search inside you and see,” reflecting a common sentiment that continuous self-awareness is part of the recovery process. The inside work did not end once sobriety was achieved. Although sobriety was part of the recovery process, the mentors spoke of recovery as something different from sobriety. To truly be in recovery, one had to have done the inside work; abstaining from substance use was not enough. As one of the participants put it in her interview, “the stopping of using drugs and alcohol is the easy part. It’s all that inside work that’s the hard part. But it’s also the part that’s worth it.”

Collectively, the peer mentors emphasized throughout the digital storytelling workshop and in follow-up interviews that the path to recovery required a strong support network to produce a sense of hope and possibility. Having a strong support network while maintaining sobriety was key to doing the inside work, and was a necessary component toward the goal of moms and babies staying together. Peer mentoring and story sharing were seen as crucial elements of support for pregnant women with SUD. The participant who uses the pink flower to represent self-transformation states in her digital story that, “sharing my story has allowed other women to identify with me, and my feelings. Like me, they no longer feel like they are all alone. They have a hope that they didn’t have when we first met.” On screen, the viewer sees the same photo of a pink flower slowly zoom out, to reveal a bed of flowers, signifying a sense of connection. This represents a key ingredient—social support through shared experience—to recovery. Another participant further emphasized the importance of social support in her interview:

I think that one thing that I have to say that is consistent for every single person I know in recovery is they have some sort of support network, like that seems to be key and across the board for everybody that I’ve come across in recovery. I have not- I have yet to meet somebody that has recovery that’s doing it all by themselves in their little, in their little bubble.

For the participants, being part of the digital storytelling workshop contributed to their sense of social support because it created a space in which they were able to better know each other through the process of creating and sharing their digital stories (Paterno et al., 2018).

Maintaining Recovery

To the mentors, a critical part of maintaining recovery was “balance.” Each talked during the workshop and in their interviews about the importance of self-care activities to maintain balance in daily life so as not to relapse. For one of the participants, self-care meant prayer and maintaining her religious faith. In her digital story, she describes the cycle of addiction, sobriety, and relapse that she experienced when she was pregnant with her first son and for the following 15 years. She visually depicts the end of this cycle with a still image of her personal copy of the New Testament, which fades into view as she says, “Finally, the relapse of eleven years is over.” For another participant, time management to balance her roles as a mother and full-time student was important, as was going to weekly therapy sessions. She noted, however, “You have to find what works for you. Like what works for me might not work for somebody else.”

Maintaining recovery led the mentors to reunification with their children and the opportunity for, as one participant put it in her interview, “another chance to do it right.” After describing the end of her relapse, the participant who incorporate prayer and religious faith in her self-care continues her digital story by detailing the positive outcomes of her recovery:

Three years clean and sober. For the first time, I’m in recovery. I’m changing. I have a close relationship with both of my sons again. I help other new women with their recovery every day. I have God in my life daily.

The viewer sees a close-up picture of the participant with a joyful expression and, as the image zooms out, the viewer sees her standing between her two grown sons, both of whom sport broad smiles, portraying a happy and connected family. For another participant, an important part of reclaiming her role as a mother and maintaining recovery was talking openly with her son about her addiction, the times that she relapsed, and the times that she “got back up in recovery and battled on.” In her view, it provided a critical lesson for her son that “some things in life are hard. We fight and we get through it and it takes hard work, but it’s what we do with adversity that defines us.”

Despite reunification with their children, participants were acutely aware of how vulnerable they were to potential relapse, so they persevered in self-awareness by attending group meetings to avoid losing what they had achieved. Described by one participant in her interview, maintaining recovery was “an ongoing process, you don’t ever, you’re never going to be recovered because it’s continual work on self to maintain recovery. It’s about becoming a person that you are okay with.” They reckoned that their own peer-mentoring work afforded them the opportunity to continue this work, while also providing support to other women such as themselves. As another participant put it in her interview,

The most important thing recovery has given me is the ability to like myself and to figure out why I did the things I did . . . the only way I can maintain that is to work with others. That’s how we keep our recovery, we work with others.

Story sharing with mentees was part of the work of maintaining recovery. For one of the participants, this was why she shared her story, including her relapses, regularly as part of her peer mentoring. She said in her interview, “The more they can identify, they can see me as a sober woman of dignity, grace, and integrity, and still know that I did those things, I believe it gives them hope that it’s possible for them, too.” Story sharing benefited not only the mentees, but also the mentors. Personal storytelling was part of the practice of self-awareness.

The Work of Peer Mentoring

Although storytelling figured into the process of maintaining recovery, the mentors also recognized that sharing their stories, including their digital stories, could figure into their endeavor to communicate to a wider audience about the experiences of pregnant women with SUD. After the digital story screening on the last day of the workshop, participants discussed the potential use of their stories for advocacy purposes. Their digital stories could be effective because, as one participant put it, the stories “all felt really genuine, and it didn’t feel like, when everyone was talking about helping out the moms, it didn’t feel like, ‘oh, this is the line I am supposed to say,’ you know like that. It felt heartfelt.” In particular, they saw their digital stories as a means to reduce stigma experienced by pregnant women dealing with addiction by providing “a different insight into who we are.” One participant said in her interview,

If, like, medical people could see it, the [digital] story, and see, you know, the other side of it, maybe they won’t judge their patients as much when they’re coming in, you know, and disclosing “I am pregnant and I am using.”

In this sense, the work of peer mentoring was “all encompassing”—in terms of maintaining recovery for one’s self, supporting other women in need, and then advocating on their behalf. Peer mentoring took on a mothering quality in and of itself. Effective peer mentoring required direct support that was 24/7, which included assessing their mentees’ needs, linking them to local services, and advocating on their behalf with health care providers. As mothers in recovery in their own right, the mentors collectively noted that specialized services were necessary for their mentees to successfully achieve recovery because adding pregnancy and a newborn into the recovery mix heightens the challenge. Often articulated was the need for flexibility in service provision. A participant noted in her interview:

Some of the rules cannot be the same across the board. Like [the moms are] told “you have to get your own rides to meetings.” I have told [the meeting organizers], well, when you tell a mother, who’s got a carrier and an infant to get her own ride, usually women who pick up other women have other women in the car. They have to accommodate for two seats not just one because they’ve got a [baby] carrier. Some of the rules have to be malleable to accommodate pregnant and postpartum women.

Encouraging hope through connection was also seen as a central part of the peer-mentoring role and something only a peer could provide by sharing her recovery story. During the final digital story screening, each of the mentors talked about the importance of sharing their addiction and recovery stories with mentees as a means of establishing hope, trust, and connection. In her interview, one participant put it as follows: “I talk about all those dirty little secrets, I do. . . and then hopefully [they] can help alleviate somebody’s pain to know they are not alone.” A strong message of hope was captured in the opening of one of the digital stories, in which the viewer sees an image of rock in a garden with the word “hope” inscribed on it. The image is portrayed in silence for 11 seconds to magnify the importance of the message.

When the state-funded, formal peer-mentoring program suddenly closed, the mentors were very concerned about what would happen not only to their current mentees, but to pregnant women yet to come, worrying that these women would get lost in the system and not offered appropriate support services. Despite the defunding of the program, the mentors continued to work with their mentees, yet they also felt at a loss, as the formal program had provided a mechanism through which they literally practiced—did—recovery as they sustained each other as mentors and maintained their own recovery by supporting their mentees. The digital storytelling workshop resurfaced this dynamic, albeit in an ephemeral fashion (Paterno et al., 2018). One participant captured this sentiment during the story circle when she said “doing [peer mentoring] helps us stay healthy” and again at the start of her digital story, saying “Shut down with one phone call. I don’t think I’ve recovered from it. It wasn’t just a job, it wasn’t just a paycheck. It was about life, sobriety, health, safety, and much more.” As she says these words, the viewer sees only a black screen, demonstrating the sense of trauma and loss experienced when the program suddenly closed.

The closure of the program inspired the mentors to seek new avenues for supporting pregnant women with addiction. At the end of her digital story, the same participant says, “I won’t let this [mentoring] program or the brave women be dismissed. I’m not sure what the end result of my purpose will be but I know I’m not being silenced anytime soon.” As the viewer hears these words, onscreen the special rock from her garden comes back into view, again displaying the word “hope” to convey her continued commitment to supporting women dealing with addiction. The importance of starting a new mentoring program focused on pregnant and parenting women with addiction was a key point of discussion throughout the digital storytelling workshop and during the final story screening.