Abstract
Effective treatment of substance-exposed pregnancies requires gender-responsive care coordinated across agencies and systems. A deeper understanding of the perspectives, experience, and practices of professionals providing these services is needed to improve care. This study examines service provision for perinatal substance use through the perspectives and experiences of healthcare and social service professionals. Using a constructivist grounded theory design, data were collected over a 7-year period. Data collection consisted of interviews and focus groups with professionals as well as observations of professional meetings and workshops where practices and procedures were discussed. A multi-level model of service delivery is described. The role of affect, particularly around issues of custody, is discussed along with structural level actions that develop in the absence of integrated treatment. Structural support both within and across systems of care is crucial to developing coordinated and compassionate care and to increasing engagement in care services.
Introduction
Pregnant people who use drugs (PPWUDs) require multiple social and healthcare services due to complexities that arise from the intersection of multiple marginalization, childbearing and rearing, and comorbid conditions. Limited resources, stigma, and fear of both civil and criminal prosecution are barriers to effective care provision (Barnett et al., 2021). Multi-faceted care is critical for the health and well-being of both parent and child and necessitates systems of care that are coordinated, compassionate, and responsive to the needs of PPWUDs. A robust literature details the lived experiences of PPWUDs when accessing healthcare and social services (Adams, et al., 2021; Barnett et al., 2021; Wolfson et al., 2021). This literature centers parenting as both a facilitator of and a barrier to engaging with care services (Barnett et al., 2021). Understanding the experiences of PPWUDs is critical; however, we also need to understand perspectives and experiences of care-providers and other professionals to develop effective and compassionate service delivery.
A burgeoning literature on the experience of care-providing professionals who serve PPWUDs reports on their feelings of frustration, anger, and burnout (Maguire et al., 2012; Murphy-Oikonen et al., 2010; Shaw et al., 2016; Whittaker et al., 2016). Of particular concern are the tensions that exist between professionals’ empathy for PPWUDs and their personal biases and judgments regarding pregnancy and drug use. These biases and judgments may impact provider’s assessments of a person’s fitness as a parent (Benoit et al., 2014; Geraghty et al., 2019; Nelson, 2016), which can have repercussions both during and after PPWUDs’ engagement with care services. Research has also highlighted institutional and systems-level practices which contribute to challenges and frustrations experienced by professionals. Identified problematic practices include time constraints, overfilled workloads, lack of adequate funding, and a lack of cross-training between reproductive care and addiction treatment professionals (Geraghty et al., 2019; MacAfee et al., 2020; Shaw et al., 2016; Syversten et al., 2018; Whittaker et al., 2016). While these studies provide important insights, most have been conducted within a specific discipline (such as midwifery or nursing) or setting (such as a residential treatment facility). It is important to examine how care is provided both within and across the complex systems of care required to meet the needs of PPWUDs.
Essential elements of effective care for a PPWUD go beyond simply receiving prenatal care and treatment for substance use disorders to include services that provide other mental health treatment, educational and supportive services (such as parenting and job training), and childcare. Additionally, services should be gender-responsive, follow trauma-informed principles, and both conceptualize and treat the parent and infant as a dyad (Jones & Kaltenbach, 2013). In the case of prenatal opioid use, opioid agonist therapy (OAT) is best practice (Saia et al., 2016). Research also suggests integrated and/or co-located service provision is optimal to provide streamlined communication, similar policies, and geographical proximity (Hubberstey et al., 2019; Sword et al., 2009; Wright, 2019). When services are not integrated and/or site-specific, care coordination is more challenging. It becomes imperative for professionals to develop strong interagency relationships to create a system of services that prevents uncontrolled drug use, provides prenatal care that includes drug treatment, delivery, and discharge, offers evidence-based birth and postpartum care, and initiates aftercare to reinforce efforts to prevent future substance-exposed births (Syvertsen et al., 2018).
While components of evidence-based practices for perinatal substance use generally, and opioid use specifically, are well documented (Jones & Kaltenbach, 2013; Saia et al., 2016), less is known about how services are provided across these systems of care. A deeper understanding of how care is provided within and across agencies, grounded in the perspectives of the professionals who provide care, can help identify leverage points for interventions to improve PPWUDs’ experiences of coordinated and compassionate care. The purpose of our study was to develop a grounded theory of service provision for PPWUDs, with a specific focus on perinatal opioid use, across multiple care systems in North Carolina, USA.
Perinatal Substance Use Service Provision in North Carolina
North Carolina has a long history of offering programs and providing resources for perinatal substance use (Godwin et al., 2020). Care provision includes screening for pregnancy and/or drug use, prenatal care delivery, addiction treatment, OAT, patient navigation, hospital-based services for labor and delivery, and as needed, the Neonatal Intensive Care Unit (NICU). Once the infant is delivered, follow-up infant development and home visiting services may be available.
Screening for pregnancy and/or for substance use can identify PPWUDs who need specialized services and/or addiction treatment. Screening and/or identification can occur in a variety of settings, such as prenatal care services, health departments, emergency room visits, and addiction treatment centers. Interaction with the legal system can also result in identification of a substance-exposed pregnancy (SEP). For a subset of PPWUDs, substance use may not be identified until late in the pregnancy or during/after delivery. Screening a PPWUD requires their consent, screening an infant does not. Receiving prenatal care late in pregnancy or avoiding it entirely are criteria used to determine which infants will be screened for substance use exposure in utero. Other criteria include a known history of prior substance use (including during other pregnancies) and erratic behavior during labor.
Once a person is identified as having an SEP, they are connected to a variety of resources, including prenatal care and addiction treatment. Prenatal care can occur through private practice, a high-risk clinic, or a group care model, such as CenteringPregnancy (Coulson & Gavin, 2020). North Carolina Community Care Networks (NCCN) implements a Pregnancy Medical Home [PMH] program for pregnant Medicaid recipients. NCCN developed a PMH Care Pathway to guide practitioners in best practices for treating PPWUDs and supplies a local physician champion and nurse coordinator for every PPWUD in their program (Berrien, Ollendorff, & Menard, 2015).
If substance use occurs as part of a substance use disorder, the PPWUD should also receive addiction treatment services. Dependent upon the severity of the disorder, this may be done through in-patient or out-patient services. North Carolina has 28 gender-responsive treatment programs, 21 of which are residential. However, these programs are distributed across 13 of the 100 counties in the state, leaving many people without accessible gender-responsive and/or integrated care. Most in-patient facilities include access to prenatal care, allow children, and offer services and resources such as parenting education, employment assistance, and childcare. North Carolina policy prioritizes PPWUDs for placement in residential drug treatment programs and the state maintains the Perinatal Substance Use Project, a service providing treatment referrals, technical support, education, and outreach to PPWUDs and the agencies that support them. (Godwin et al., 2020).
Hospital-based care includes interactions with labor and delivery nurses, mother and baby nurses, OBs or midwives, hospital-based social workers, lactation consultants, pharmacists, pediatricians, and (dependent upon the needs of the infant) neonatologists, NICU nurses, and occupational therapists. For PPWUDs receiving addiction treatment for opioids, the hospital is responsible for any OAT dosage they need until discharged. An interdisciplinary team of professionals (which may include a Child Protective Services [CPS] case manager) assesses the best placement for the infant and works toward a safe discharge with potential follow-up plans (based on the infant’s needs). An infant with in utero opioid exposure is required to stay a minimum of 5 days to check for symptoms of Neonatal Opioid Withdrawal Syndrome (NOWS). If NOWS is diagnosed, an infant may be admitted to the NICU, in which case the parent is discharged before the infant. While best practices include “rooming-in” of parent and baby, not all facilities can achieve this.
Federal law (Child Abuse Prevention and Treatment Act-CAPTA) mandates reporting of an infant born affected by substance use, but North Carolina policy does not mandate reporting during pregnancy. Modifications to the CAPTA requirements occurred during the study. North Carolina now requires CPS be notified of any substance-exposed infant. In the absence of abuse or neglect an optional referral is sent to Care Coordination for Children (CC4C). The CC4C program, also implemented by NCCN, works to ensure connection to a pediatric medical home along with access to a variety of resources for children from birth to 5 years of age. If there is suspicion of abuse or neglect, CPS will open an investigation. Use of prescribed substances, including OAT, is not on their own considered an indication of abuse.
When the infant is discharged, goals include continuing addiction treatment (as needed) for the parent, connecting the family to a pediatric practice, and monitoring child development. CC4C can help refer and navigate parents through additional services and support (e.g., parenting classes, developmental clinics). In cases of suspected or known abuse/neglect, CPS may monitor the parent or place the child in alternative care. When CPS is involved, there are several mandatory requirements for the parent to meet to keep or be re-unified with their child(ren) including being in recovery, employment, and safe housing.
Methods
Design and Setting
We used a social constructivist grounded theory design (Charmez, 2006) to examine processes of care provision across systems and agencies operating in North Carolina, USA. At the start of the study, several grassroot efforts across the state were initiated to address the rising prevalence of prenatal opioid use and the subsequent increased rates of NOWS as well as foster care placements. Discussions and dissemination events advocating for advancement of evidence-based practice and the reduction of stigma were also conducted across the state. This combination of resources, gaps, and advocacy efforts created a unique opportunity for us to examine social constructions of care services for PPWUDS within the state. Social constructivism asserts personal truth is situated within a social narrative, specific to cultural and historical context, that directly impacts how people make meaning of their experiences (Amineh & Asl, 2015). Social constructivism provided a way to not only account for the context in which data were generated, but to envelope the data within both the specific caregiving experiences of care professionals as well as the state-wide conversations surrounding evidence-based practice and perinatal opioid use.
The study began as a collaboration between the primary author and a community agency responsible for organizing some of the grassroot efforts. Data collection lasted 7 years (November 2011–October 2018) and consisted of participant observations, interviews, focus groups, and document review. The academic-community partnership continued throughout data collection and preliminary findings aided the community partner’s efforts in serving their clientele. The final analyses and development of the grounded theory model was conducted by the academic team, which included expertise in qualitative methodology, maternal/child health, human development, and NICU nursing practice. The Institutional Review Board of the primary author’s institution approved the study with an informed consent procedure.
Recruitment and Sampling
Figure 1 provides an overview of our recruitment and sampling procedures. Our initial sampling strategy occurred within an advisory committee focused on exploring best practices in perinatal substance use. The committee, a natural starting point for recruiting participants for interviews and conducting observations, consisted of healthcare and social service professionals from agencies and organizations offering services to PPWUDs. New agencies and organizations were continually invited to join the committee across the 4 years of formal meetings. In addition, representatives from additional organizations across the state regularly presented at meetings. The primary author, a participant in the advisory committee, explained the study’s purpose and procedures and sought approval from members across multiple meetings. Interviews were requested from individual professionals by email. Most formally interviewed participants identified as female and white with ages ranging from 25 to 73. Some participants identified as Black, African American, or Human. Almost all participants held an advanced degree and their average of years working in their field was 16, with a range of 2–40 years.
Recruitment and sampling process.
As perinatal opioid use became a central topic of discussion in committee meetings, theoretical sampling (Charmez, 2006) was used to focus recruitment on professionals who could speak to that issue. Likewise, as planning meetings for committee actions were convened and recommendations for additional learning opportunities (e.g., practice-focused conferences and workshops) on perinatal opioid use were presented, observations were conducted at these events. Participants in planning meetings included some advisory committee members along with other care professionals in similar disciplines. Presenters at events represented a variety of professionals including academic and clinical researchers, advocates, program administrators, and frontline professionals. Disciplines represented across meetings and events included social work, nursing, neonatology, obstetrics, addiction medicine, and child welfare services. Most events also included at least one PPWUD as a presenter. While no information was provided on the individual professionals attending these events, flyers and other announcements specifically targeted nurses, professionals working in neonatal intensive care units [NICUs], social workers, counselors, case managers, and law enforcement professionals.
Data Collection Procedures
We conducted observations during advisory committee meetings, subsequent planning meetings, and at identified dissemination events. The committee met quarterly for the first 4 years of the study. A total of 13 meetings (approximately 2 hours each) were observed. From committee identified issues and agenda items, five planning meetings (approximately 60 minutes each) were observed with specific agencies and service professionals. In addition, five events (1–2 days long) were observed along with two half-day events. Brief notes were taken during all observations and expanded into detailed field notes within 24 hours. Observations focused on content covered, information shared, questions and strategies posed, and issues identified as significant and relevant to the topic.
Shared documents, such as event flyers, brochures, agendas, handouts, and slide presentations, were collected along with minutes of advisory committee meetings, when available. Other, publicly available, documents collected included state policies and bills, state task force and committee agendas, minutes, and accompanying slide presentations, as well as blog posts and newspaper articles on perinatal opioid use. Educational information, such as clinical guidelines, websites, and toolkits, disseminated throughout the state were collected as well.
We took extensive field notes during all formal interview interactions, which were also audio-taped and transcribed. Nine interviews were conducted over the course of the study, lasting 45 minutes on average. We conducted interviews in a location of the participant’s choosing, often their office or a local coffee shop. Interviews were conducted conversationally, using an interview guide, and queried participants on their experiences working with the population. This included challenges they faced while providing services and how they coordinated care across agencies. We conducted a group interview, using a similar guided conversational format, which lasted approximately 90 minutes. We also held three focus groups (approximately 90 minutes each) that used a different interview guide. The aim of the focus groups was to delve deeper into professionals’ experiences by capturing the meanings they made of preliminary interpretations of the data. We presented these preliminary findings anonymously through poetic transcriptions (Nichols et al., 2015), combining the voices and stories of multiple participants and observations. During the focus groups we read these research poems to participants and used them as prompts for questions on the relevance, impact, and potential audiences for future dissemination and intervention activities.
Data Analysis
We analyzed data by stages and concurrently with data collection. Beginning with data immersion, which we conducted through readings and re-readings of transcripts, field notes, and documents, we captured early reactions and critical issues in shared memos. We also completed an open coding procedure in the early stages of analysis. Through this procedure we identified critical actions and processes within the data that led to the development of focused codes and, after several iterations, a finalized codebook. We used Atlas.ti for data management and retrieval purposes, with all transcript and observational data coded by the first author and a research assistant. Coding discrepancies were resolved by discussion.
We then applied situational analyses techniques (Clarke et al., 2018), specifically situational and social arena mapping, to extend interpretations of categories beyond simple descriptions of care and include important contextual complexities, such as disciplinary norms and organizational culture and constraints. Situational maps and memos helped us identify critical human, non-human, discursive, temporal, political, and sociocultural elements within the data. The role of emotion in care practices became a central concept through this process. We then used relational mapping to explore how these elements interacted within the data. Social arena mapping helped us identify critical arenas of care that operated both within and between disciplinary boundaries.
Our team wrote and shared memos throughout the analysis process. In addition to traditional analytic memos, we also employed research poetics. Poetic transcription, a process where data are reduced and crystalized into poetic narratives, has been found to aid in analysis by deepening understanding and connection to lived experiences (Nichols et al., 2015). We combined data from transcripts and field notes and condensed them to form poetic narratives of issues identified through traditional analytic processes. The team met bi-monthly to review coded data, discuss shared memos and research poems, and construct the model presented below. We audio-recorded these meetings as well as described them in process memos to document an audit trail of the analysis.
Findings
Our study examined care provision for PPWUDs across various healthcare and social service systems in North Carolina. The final model included three major thematic areas (context, affect, and action). Key concepts within each area that illuminate how care is provided are described below. The actions taken by care professionals as they render services are described within a multi-level (structural, interpersonal, and intrapersonal) framework. Table 1 provides an overview of the key concepts by area.
Key concepts in model of perinatal substance use care provision.
Context
The context in which professionals worked was important for understanding how care was provided. Of particular importance were disciplinary sociocultural norms and the organizational culture and constraints within which professionals interacted with PPWUDs. The importance of these contextual elements was evident in the data and expressed through care practices. For example, although treating the parent/infant as a dyad is considered a best practice, professionals reported focusing their care provision on either parent or fetus/infant, expressing difficulty with viewing them as a dyad. A social worker summed up her position by stating: “My job at the end of the day is to make sure children are safe.” Part of this difficulty can be attributed to discipline-specific lenses that specify the patient. For instance, among NICU nurses the infant is the patient; concerns for the parent primarily revolved around nurses’ perceptions of their infant-caretaking ability. The opposite perspective occurred in addiction treatment. In a group interview, a medical director stated: “our patient is the mother, and the baby is typically the neonatologist’s responsibility of managing.” These contrasting perspectives represent one way in which care practices varied by disciplinary and institutional norms.
Differences in both organizational culture and organizational-level constraints are also important for understanding how care is provided. Within addiction treatment, for example, differences included accessibility (e.g., insurance acceptance); location and intensity of care practices (e.g., in-patient/residential or out-patient); the care practice approach (e.g., use of gender-responsive and/or trauma-informed approaches); and staffing decisions. A comparison of two outpatient addiction treatment clinics demonstrated how both structural constraints and organizational culture can combine to affect care provision. In one clinic all pregnant clients ended up assigned to the only female counselor in the clinic. Administrators explained this wasn’t her choice but noted the men were afraid of taking pregnant patients. In contrast, another clinic assigned pregnant patients to both male and female counselors as well as a male RN. Here treatment for the pregnant patient was described as a critical issue that received “gold star” attention:
Even though we, as non-medical clinicians, don't necessarily have specific training, I can tell you that when a patient is pregnant, or when a patient becomes pregnant, they get lots of gold stars next to their name at that point in time and the clinical documents have to reflect, that we have a very critical issue here that needs to be managed and monitored, to the best of our ability. (Clinic Director)
Both clinics served outpatient clients but only one accepted Medicaid, which changed the demographic profiles of their clientele. The Medicaid-accepting clinic reported clients traveled for over 2 hours on public transportation for their daily methadone dosing and counseling appointments. Their clientele’s greater logistical challenges constrained their ability to engage in additional services, such as childbirth education, especially if services were provided in other locations. If services could not be co-located within the clinic, professionals did not believe referrals would be utilized so they did not address them.
Affect
Professionals expressed a variety of emotions related to their work with PPWUDs. They used emotional language when describing their everyday work and when presenting evidence-based practices. Affective responses were described when discussing both interactions with and beliefs about PPWUDs as well as when describing the contexts and systems that they worked in. Negative emotions, such as anger, frustration, and sorrow were expressed alongside feelings of hope, pride, and compassion. Anger was described as a common response to PPWUDs by others, but few participants actively expressed anger or explicitly aimed their anger towards clients. One exception occurred at a workshop designed to educate frontline professionals on evidence-based practice. The trainer asked how participants would feel if they saw a woman, 6th months pregnant, ordering a second drink at a bar. One audience member said this is when her irritation would turn into anger. In the discussion that followed, most of the audience expressed heightened levels of anger at the hypothetical woman.
Participants also expressed sadness at witnessing or hearing of PPWUDs’ experiences. Sorrow, empathy, and support were strongly expressed in conferences and meetings where PPWUDs were invited to tell their story. These stories changed the tone of the gathering and elicited expressions of both dismay and reverence. The PPWUDs were often called courageous or brave. Professionals also described actively trying to take the perspective of PPWUDs and find ways to relate to their challenges, as was expressed by a focus group participant: I think we also have to turn it back around and say even though I’m not in your situation, I can see. . .if I could just see through your eyes. . .because it is sad. . ..Who am I to judge you? Your cross is just not my cross. (Pregnancy Case Management Staff)
However, this compassion for PPWUDs was often complicated by feelings and concerns for the infant/fetus (“my heart just hurts for her, but my heart hurts for this little baby.) While they understood addiction as a disease, professionals still struggled with accepting the behaviors of parents in their care. It was particularly difficult for them to reconcile PPWUDs’ disengagement with care services.
For me the struggle there is would you just not do it in general? Is it because you’ve got something else going on? There’s so much else going on in your life? Is it because you DON'T feel like this is important? The struggle for me there is [in] trying to weed all that out. Sometimes I can’t. (Early Intervention Home Visitor)
Professionals who worked in the NICU would often describe how witnessing infants in withdrawal made it difficult to empathize with PPWUDs. The visual evidence of their prenatal drug use, even when it was legally prescribed, made it difficult to feel compassion. Further, some participants struggled with the use of OAT because of the effect on the infant. The quote below highlights the intersection of bias, misinformation, and child-centric perspectives expressed by some participants:
I don't know HOW I feel about [methadone] because I understand that it is a form of treatment but at the same time now these babies are being born addicted to it so it’s like treat the moms during the pregnancy but then we have these babies that are withdrawing. (Social Worker)
While anger was acknowledged by some as common among professionals, frustration was more likely to be directly expressed by participants in this study. Some frustration was in response to challenges of working with clients, but more frequently professionals expressed their frustration and anger towards the larger system. Systematic issues included a lack of resources and difficulties coordinating care for the population. Describing the lack of resources available to PPWUDs and the unrealistic expectations placed upon them by “the system,” participants used words like “horrible,” “tragic,” and “heartbreaking.”
Participants expressed frustration with overwhelming workloads and described feeling like they “get nowhere” day after day. They also linked their frustrations to realizing “the system” set PPWUDs up for failure rather than success. Many described the “heaviness” they felt from working within a domain that could provide “no easy fix.” Despite feeling frustrated and overwhelmed, professionals in this study were committed to change and shared their ideas on how the systems of care could be improved. They held onto hope, as expressed by a focus group participant:
It may be wishful thinking, it reminds us that we have to keep doing what we are doing, and we have to keep advocating and helping and doing what we can do and maybe eventually we may be able to do more, because there will be more of us. (Family Support Staff)
The issue of custody elicited the strongest emotions by professionals when describing their work experiences. The determination of who would be responsible for the infant once it was born was a central question for them, especially those working at the frontline, and it cast a long shadow over their considerations and actions. Many professionals worked in positions where they were required to report a client’s substance use to CPS. As described in the observational field notes below, this often impeded their ability to develop trusting relationships.
She is mandated to report drug use and feels torn; they do universal screening and then she is placed in the position of trying to build trust but having to be the one to make the call; she said there were no resources. Later she said it is either ‘jail or CPS’; it breaks the rapport she is trying to build, some CPS workers are great, but others are not. She tells of a recent time when the mother was with her baby up until the last minute and the CPS worker never told the mother that the baby was going to be taken away. When she asked her why she didn’t tell the mother to prepare her, the CPS worker said she had multiple babies taken away before, so she knows the drill. (Conference Field Notes)
These field notes also illustrate the conflicting feelings and frustration professionals described around interactions with CPS. For some professionals, such as the one above, actions of individual case managers were variable and problematic, causing harm to their clients. Others expressed concern over how CPS workers made decisions. They suggested their expertise was not sufficiently considered and several described incidents where they felt custody should have been denied to their client. Their concerns for children who went home with PPWUDs stayed with them after their client was discharged.
Actions
Participants’ descriptions of the actions they engaged in to provide care for PPWUDS spanned multiple levels. While many of their behaviors are best represented at the interpersonal level, they also reported engaging in actions at the structural or systemic level and at the intrapersonal level. Descriptions of professionals’ behavioral processes are described below within the stated levels.
Structural Level
Several activities occurred at the structural level, including Connecting, which encompassed activities around care coordination. Connecting included actions taken to connect PPWUDs to emotional and tangible support resources, which often occurred by making referrals and helping clients complete necessary paperwork. Some professionals went as far as making the calls themselves, citing issues such as difficulties getting through to overburdened agencies as well as PPWUDs’ limited resources, as described below:
We know who to speak with and we can get the appointment faster than mom can and again sometimes we do get overwhelmed. Don’t keep putting us on hold. Just let us go to the direct person we need to speak with. But as a mom, who doesn’t have the minutes to call or doesn’t have the time to come here, or the transportation to get here, that is frustrating, and she’ll give up. We like to make sure that those connections are made, and we like to do everything to make it a smooth transition for the mom. (Program Manager)
In the absence of integrated and/or co-located care, Connecting required networking and maintaining important relationships with other professionals at agencies across the state, as mentioned by the professional in the quote above: “we know who to speak to.” These connections provided knowledge about resources and which agencies could provide quick responses. It also included keeping track of agencies that were unresponsive or difficult to work with and avoiding them when they could. Working on interprofessional teams within their own agency and building relationships in those teams to provide the best care to clients was also part of connecting.
Making and maintaining connections across agencies was critical due to the complexity of the systems of care involved and the dearth of integrated or co-located care. Professionals needed to help clients navigate within and across systems. While doing so, gaps and barriers often become apparent. Changing occurred when professionals elected to do something to fill the gaps. Changing how care was provided often occurred through the creation of programs that supplemented missing services. It also occurred through training other professionals in best practice and/or to reduce stigma. For instance, one interdisciplinary grassroots organization launched a state-wide knowledge dissemination project combining evidence-based practice and stigma reduction information. Other programs that emerged during the life of the study included providing reproductive health programming within local addiction clinics, use of the CenteringPregnancy model for specialized group care, programming that connected PPWUDs with local reproductive health professionals and provided tours of the NICU, as well as an initiative to standardize NAS protocols and reduce stigma within NICUs.
As professionals connected clients to resources and tried to create change within systems of care, they were also Advocating for PPWUDs. Advocacy occurred at multiple levels, often starting within professionals’ own organizations as they worked on interprofessional teams, as detailed below: It’s really crazy once you get with an interdisciplinary team and everybody has their own mission or who they’re advocating for but at the end of the day I tell them you know let’s look at what’s best for the family–what’s best for the family and let’s give mom a chance. (Program Manager)
Advocating also included educating other professionals on both medical and social issues unique to perinatal substance use generally and opioid use specifically. Best practices in perinatal opioid use are often counterintuitive and multiple stigmas surround both PPWUDs and treatment. Given the stigma surrounding perinatal substance use, professionals reported instances of having to remind peers to show compassion and/or to stay focused on their task, as described below: I work a lot with the staff too in saying “. . .let’s NOT focus on the social situation. Focus on caring for the baby and caring for the mom and supporting her in bonding with her infant and let the other professionals take care of the other things.” (Social Worker)
While most participants advocated for clients within their own professional sphere, a small number of professionals brought issues to the attention of the public and policymakers. One retired medical doctor spent his spare time advocating on behalf of PPWUDs. He described his work as “making sure people understand, to the best of my knowledge, what the problem entails and why women need our active support.” A small group of advocates presented at state taskforce and committee meetings, which included legislative members, to educate them on perinatal substance use. Participants also reported “behind the scenes” advocacy was required when bills promoting punitive policies were put before the legislature. Advocacy efforts, however, did not generally focus on acquiring additional resources, such as gender-responsive treatment centers, for PPWUDs and their families.
Interpersonal Level
A large part of care provision focused on professionals’ interactions with PPWUDs, with Sharing Information as a primary activity. For example, participants described the need to inform PPWUDs about best practices, as many clients want to taper off opioid use, including OAT, when they discover they are pregnant. PPWUDs also needed to be educated on what to expect from an infant in withdrawal, on how a NICU operates, and on protocols surrounding mandated reports to CPS. As mentioned previously, these interactions were often emotionally charged as professionals were aware of clients’ fears when CPS was involved. Addiction treatment professionals found it necessary to educate and empower clients about medical issues in case interagency communication broke down. Multiple examples of PPWUDs giving birth at hospitals that were not prepared or educated on OAT in labor and delivery were found in the data. Below is a quote illustrating how one agency handled the problem.
We try to empower, educate, the mothers, the pregnant patients, and say “We’re a partner in this, you need to talk with the client and let them know that we are part of the equation, so that you don’ t get into trouble.” Or they can go into surgery, and the anesthesiologist doesn't know that methadone is on board, and next thing you know you’re getting something. . .. you you don't make it out. (Medical Director)
Several participants also noted the importance of Listening to clients. A neonatologist described learning early in his career that his work required him to “listen” rather than “talk to” his patients. He advocated for this approach whenever he was in the position to educate other professionals. Another form of listening came from a support program’s philosophy of storytelling. The program administrator underscored the importance of providing PPWUDs the opportunity to both tell their stories and to have their stories heard: “Giving them the chance to tell their story is a big one. . . it’s just so healing to be able to tell that to somebody who is NOT there to judge you.” However, some professionals acknowledged that due to the emphasis on imparting information and connecting clients to needed services, particularly addiction treatment, they were not always willing or able to listen to them: “I guess most of the time maybe we don’t ask the mom her perception, because we are always providing information, kind of directing them rather than asking them.”
Listening and sharing information are important aspects of relationship building but Developing a Trusting Relationship with PPWUDs required more than effective communication. Professionals noted several issues connected to establishing and maintaining clients’ trust. Threat of custody loss made it difficult for some social service professionals to work with clients as they were often erroneously assumed to be responsible for making custody decisions or that they were attempting to remove/revoke custody: They think we are DSS [Division of Social Services] and sometimes they pull back, because they assume we are there to report what’s being done and to have their babies taken from them, which is the total opposite of what we want to have done, because we want to help them. (Pregnancy Care Manager)
Professionals also recognized that PPWUDs interact with multiple providers over time, due to both the number of services they require and the large turnover that can occur in the field. As one participant explained, multiple temporary relationships can have negative effects on care engagement: You do begin to develop a relationship with somebody that can be at times a pretty intense relationship depending on how long your baby’s there. . .in the NICU [and] how much support you get from that person or how much you depend on the support from that person and then it switches to another person. . .. my experience with a lot of the women that I work with it’s been that if they feel that relationship is temporary, they’re only going to open up so much. (Early Intervention Home Visitor)
Part of Developing a Trusting Relationship required professionals to trust and believe in their clients, and this was not always easy to do. Several participants described making conscious attempts to humanize PPWUDs and support their parenting efforts. Examples included reminding themselves and their colleagues to think of “addiction as a brain chemistry disease” and that “nobody wakes up one morning and says ‘I think I’ll be a drug user.’” They also described praising their clients for the efforts they made, like showing up for prenatal appointments, and reminding them of all they are doing to help their baby. Several participants mentioned the importance of seeing clients as parents first and celebrating their pregnancy with them. Professionals in an outpatient treatment facility knitted outfits and afghans for babies’ first trip home to mark the occasion.
Lack of trust in clients’ accounts of their experiences was often tied to experience with clients who are struggling with a substance use disorder. In a training for a pilot reproductive health program delivered through a methadone clinic, the facilitator referred to the clients as “living in Liarsville.” Other professionals distinguished between the credibility of PPWUDs in “active addiction” versus those in recovery. As highlighted in the quote below, the actions of one group were perceived as decreasing trust in the other.
You do also get the moms that just tell you one story after another and that complicates it too for everybody because then you just don't know what to believe and those are typically the moms NOT in good place yet, but it makes it hard. (Program Director)
Difficulty believing PPWUDs could lead to professionals Holding Them Accountable as a strategy designed to determine “the truth.” In the quote below, a participant describes using investigative techniques to hold clients accountable to truth-telling.
They’re manipulators so they will lie and they will change their stories and they will try to turn your words around on you. . . and so a lot of times I’ll go in and see someone and then we might do a tag team. Well let’s see what they tell you. We do good cop/bad cop type thing. (Social Worker)
Frontline professionals also described the need to be “upfront, open, and honest” with clients to both convey the full extent of potential consequences and as part of their effort to develop a trusting relationship. In some cases, this meant using language that appeared confrontational, such as: “what are you going to do to show that this is not the road you’re going to take, that you’re going to change direction and not use drugs anymore?”
Intrapersonal Level
Since perinatal substance use is a complex and emotionally charged issue, professionals were often Accepting Their Limitations. Participants described reminding both themselves and their colleagues of the boundaries around their responsibilities as it was easy for those boundaries to get blurred. Professionals also used this strategy when explaining to PPWUDs that it was their mandated responsibility to report a “drug positive baby” to CPS. In this case, the limitations they had to accept were imposed by policy. Accepting the limitations of their position helped counter feelings of frustration and being overwhelmed but it could also bring up feelings of powerlessness, as described below.
Because even us we are truly; we are only there to support. We have no power whatsoever [laughs]. We are actually there to help out where the medical staff doesn’t have time, just to support. (Family Support Staff)
While Accepting Their Limitations helped professionals navigate work-related stress, many also described feeling exhausted by the work. Burnout among professionals was frequently discussed during conference presentations. Descriptions of burnout were often found among professionals who used “hard-core” approaches when working with PPWUDs and those who struggled to trust clients. The use of “hard-core” approaches can represent a disconnect between the professional and the patient. Disconnecting can result from feeling frustrated and/or overwhelmed or it may be a necessary defense mechanism. A workshop facilitator relayed a story of a psychiatrist who needed to stop treating PPWUDs while she herself was pregnant because of the strong emotions the work was evoking. The psychiatrist feared her professional care provision would be negatively impacted. In this case, disconnecting was both an act of patient care and self-care.
Discussion
Our model describes a variety of actions care professionals provide to PPWUDs within and across systems of care that occur at the structural, interpersonal, and intrapersonal levels. In doing so, it highlights critical contextual factors that need to be considered as well as acknowledges the importance of emotional responses to doing this work.
Importance of Emotion Work
Professionals in our study discussed how their personal experiences influenced care provision with a particular emphasis on steps needed to mitigate what they described as a pervasive sense of frustration with practices around perinatal substance use. Sources of frustration ranged from a sense of distrust of PPWUDs to the overwhelming demands of specific workplaces as well as impossible demands placed on clients by “the system.” Many professionals expressed difficulty maintaining empathy for PPWUDs knowing infants would struggle through withdrawal, making it more difficult to provide compassionate care. While best practice promotes treating the parent and infant as a dyad and using harm reduction approaches (Jones & Kaltenbach, 2013), many professionals struggled with biases that conflicted with these practices. Discrepancies between what professionals feel and what they believe they should be feeling can result in an increased burden of emotion work (Kilty & Orsini, 2019).
Emotion work, an important part of care provision, is particularly relevant when working in areas with high moral uncertainty. Professional ethics, such as patient autonomy, beneficence, and nonmaleficence, can become incongruent when there is a perception that care provision creates a clash between the interests of the parent and interests of the fetus/infant (Premkumar & Gates, 2016). Tensions that arise from these incongruities can create moral distress for professionals (Welborn, 2019). As others have discussed (Kilty & Orsini, 2019; Premkumar & Gates, 2016), promoting compliance through policies that criminalize pregnancy and/or promote family separation can exacerbate this distress and negatively affect care. North Carolina’s perinatal substance use policies are designed to support PPWUDs and prioritize their access to gender-responsive addiction treatment. Over the course of the study, the state rejected several bills that proposed more punitive approaches. These approaches, adopted by some neighboring states, have been shown to decrease care engagement and harm both parents and children (Faherty et al., 2019; Kozhimannil et al., 2019).
In our study, incongruities perceived by service professionals were often resolved by defaulting to the needs of the fetus or infant. This approach can further alienate PPWUDs from service professionals and contribute to custody loss by decreasing their engagement in care services (Wolfson et al., 2021). Emotions related to issues of custody and healthcare interactions have primarily been described in terms of PPWUDs’ experiences (Barnett et al. 2021; Kenny, Barrington, & Green, 2015; Wolfson et al., 2021), our findings add to this literature by identifying the significance of emotional work around custody issues for service professionals.
Barriers to Care Engagement
Our findings support the growing literature on provider experiences working with PPWUDs. Research has highlighted both the importance and the difficulty of building trusting relationships with clients (Coupland et al., 2021). PPWUDs are often subjected to multiple marginalization as well as more likely to have suffered trauma (Jones & Kaltenbach, 2013). Previous research has demonstrated their difficulties trusting the healthcare system (Cockroft et al., 2019) and that interactions with professionals, especially CPS, can cause additional trauma (Adams et al., 2021). Developing trusting relationships can also be hampered by structural issues, such as under-staffing, high turnover rates, and a focus on efficiency in provider–client interactions (Cockroft et al., 2019). All these factors increase the difficulty of creating trust and can be a barrier for PPWUDs to engage in care services. This study adds to that literature by identifying the actions of professionals, at the structural, interpersonal, and intrapersonal levels, that can contribute to as well as alleviate these barriers. While developing trusting relationships occurs at the interpersonal level, our model illuminates how actions needed to develop trust are influenced by structural level factors beyond the control of the care professional. They are also affected by care professionals’ emotional reactions to systemic challenges as well as policies and procedures that force custody to be at the center of provider–client interactions.
This study is unique in its examination of provider experiences across multiple healthcare and social services and in the absence of integrated and/or co-located service provision. Research has shown the importance of integrated treatment on care engagement and positive outcomes for parent and child (Hubberstey et al., 2019; Sword et al., 2009; Wright, 2019). Findings from this study not only describes the work required of professionals to create care continuity under these circumstances but also begins to identify important contextual factors that can serve as additional barriers to effective care provision. For example, disciplinary norms and lenses were associated with how the parent-infant dyad was perceived by professionals, which can affect care provision. In the absence of a structure that supports interdisciplinary and integrated services, these differing perspectives can lead to miscommunication and disruptions in care as well as stigmatizing experiences for PPWUDs. Likewise, differences in organizational culture and constraints, even within the same discipline, led to differential care experiences and service opportunities. These contextual differences can lead to care inequities.
Individual Efforts in Place of Structural Support
It is important to note that many of the professionals in our study were not working in organizations solely serving or specifically designed for the unique needs of a population that uses substances. This further complicated both their work with PPWUDs and their perspectives around the time and energy requirements associated with this work. Frustration became especially potent when professionals sensed that they could not effectively do their jobs either because of lack of buy-in from their patients, lack of organizational support (either within their own organization or across organizations), or a combination. Often these frustrations necessitated individual-level negotiations aimed at balancing care, service provision and self-care. Professionals often felt they were tasked with ensuring congruence of services and care. While analyses showed there was an emphasis on creating comprehensive systems of care for PPWUDs, ultimately individual professionals bore the brunt of establishing and maintaining the interpersonal relationships that made these systems (more) possible.
Much of the work taken up by professionals encompassed individual, organizational, and systemic components but was situated as part of the personal/professional responsibility and labor of providing service and care. For instance, connecting in our model describes building relationships among professionals and across organizations to coordinate care provision. Professionals’ perceptions that they were responsible for forging all major relationships around service and care provision for PPWUDs may denote an assumption of individual responsibility in the absence of organizational/systemic engagement. Likewise, the actions of changing and advocating demonstrate efforts contributed by professionals above and beyond their positions to meet the needs of PPWUDs. These efforts, while commendable, did not alleviate structural challenges. For instance, despite participants frequently noting an overwhelming lack of resources, garnering more tangible support was not among their advocacy efforts. In addition, when supportive programs were developed, they were often piecemeal approaches dependent upon the further efforts of frontline professionals. Our study not only offers insight into how professionals provide care services but also highlights how they shoulder nearly the entire burden of care coordination and begs the question: what is the systemic role in caring for PPWUDs?
Limitations
This study had several important limitations that should be noted. Since participant recruitment occurred through an advisory committee, our findings represent experiences and perspectives of professionals who had some level of commitment to advocate, empower, and support PPWUDs. While this did not guarantee an absence of stigmatizing attitudes and beliefs, it most likely under-represents them in descriptions of provider–client interactions and over-represents actions of advocacy, change and connection. Similarly, observational data came from conferences and workshops where presenters included a mixture of researchers and practitioners with a vested interest in promoting best practice for the population. Observations noted among the audience were also likely to over-represent perspectives of professionals choosing to learn about improving care for PPWUDs. In addition, while experiences and perspectives of more elite professionals were shared through presentations at conferences and workshops, our interview data over-represents frontline professionals’ experiences in providing care. There is a lack of perspectives from obstetricians and midwives. These providers play a critical role in the care of PPWUDs, and future studies should include their experiences.
Conclusion
Our study builds upon previous research identifying the systems of care needed to address perinatal substance use (Syversten et al., 2018). Understanding how care provision is enacted is critical for increasing engagement in needed services as well as identifying ways to improve the integration of healthcare and social services across multiple systems. Supportive rather than punitive public policies are a necessary but insufficient approach to increasing care engagement and decreasing stigma. Our study highlights the critical role of structural and systemic supports within and across systems of care. Findings illustrate how the absence of structural support can make care provision difficult and stigmatizing and highlights the need for systemic change that includes reimbursement for both the labor of care and the labor of coordination as well as adequate time with individual clients, through a reduction in workload, to develop trusting relationships necessary for care engagement. By understanding both contextual elements at the systems level and the centralized role of emotion at the care-provider level, we stand a better chance of reimaging systems of coordinated and compassionate care.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
