1. Blair, Lisa M. PhD, RN
  2. Ashford, Kristin PhD, WHNP-BC, FAAN
  3. Gentry, Lauren BS, RN
  4. Bell, Sarah
  5. Fallin-Bennett, Amanda PhD, RN


Opioid use in the perinatal period has escalated rapidly, with potentially devastating outcomes for perinatal persons and infants. Substance use treatment is effective and has the potential to greatly improve clinical outcomes; however, characteristics of care received from providers including nurses have been described as a barrier to treatment. Our purpose was to describe supportive perinatal care experiences of persons with opioid use disorder. A qualitative descriptive study design was used to examine experiences of 11 postpartum persons (ages 22-36 years) in medication-assisted treatment for opioid use disorder at an academic medical center in the southern region of the United States. Participants were interviewed about experiences with perinatal and neonatal care during the child's hospitalization for neonatal abstinence syndrome surveillance and/or treatment. Four themes of supportive care experiences emerged: informing, relating, accepting, and holistic supporting. Participants reported a range of positive and negative perinatal care experiences, with examples and counterexamples provided. This fuller understanding of perceptions and lived experiences of care can inform practice changes and educational/training priorities. Future research is needed to facilitate development of comprehensive care models geared to address perinatal care needs of persons with opioid use disorder.


Article Content

Rates of perinatal opioid use disorder (OUD) have quadrupled over a 15-year period in the most recent trend data, affecting 6.5 per 1000 live births in 2014 in the United States (US).1 Opioid use during pregnancy, particularly untreated OUD, leads to multiple perinatal and long-term health outcomes, including higher rates of maternal mortality, preterm birth, low birth weight, and obstetric complications.2 Despite the enhanced availability of effective treatment for OUD, barriers to treatment are widespread in the perinatal period.3 Research and clinical practice to date have largely centered on systems-centered aspects of care,4,5 patient management,6 or provider perspectives,7 but little is known about the lived experience of such care by childbearing persons with OUD. Furthermore, while calls for supportive care are ongoing in this patient population,8 little is known about how patients with perinatal OUD perceive care that nurses and other providers deem supportive. This qualitative study seeks to characterize supportive perinatal (conception to postpartum and neonatal) care experiences of persons with OUD.


Long-standing scientific consensus classifies OUD as a chronic brain disorder that can be successfully managed and treated.9 Individuals in treatment for OUD have similar relapse and noncompliance rates as individuals in treatment for chronic diseases such as hypertension, and asthma.9 Numerous barriers to treatment exist in all persons with substance use disorders (SUDs).10 Patients in the perinatal period experience vastly enhanced barriers related to being pregnant and being parents of infants affected by prenatal substance use.11 Persons with OUD have reported considerable fear of criminal, social services, and social consequences from substance use in pregnancy and employed strategies including avoidance of prenatal care, hiding pregnancies, and withdrawal from social supports to remain undetected.12 Such barriers and fears place persons with perinatal OUD and infants at risk.


Despite the complex etiology of OUD, major social stigma continues among both the general public13 and care providers. Patients with SUDs are more stigmatized among healthcare providers than other stigmatized groups such as individuals with nonaddictive mental health disorders.14 Stigmatization of patients with OUD by healthcare providers contributes to negative outcomes, particularly in pregnancy. Stigma is one of the primary considerations for why pregnant persons avoid disclosure of substance use problems and even avoid prenatal care, leading to added risk of birth complications and neonatal abstinence syndrome (NAS).15,16 Nurses have previously reported feelings of blame toward mothers when caring for infants with NAS and difficulty relating to persons with SUDs due to stigmatization and the difficult social circumstances from which many persons with OUD hail.17


Long-term success in treatment for OUD and improvement of perinatal and infant outcomes hinge strongly on provider-patient rapport, treatment availability (eg, appropriate referrals), and an environment of safe, nonjudgmental and effective care.3 Positive, supportive care of childbearing persons with OUD and affected infants is critical to improving outcomes for this vulnerable population.8,18


The aim of this study was to characterize experiences of perinatal (conception to postpartum and neonatal) care from the perspective of childbearing persons with OUD, to specifically elicit experiences of supportive care through examples and counterexamples. Themes identified herein may be used to inform practice across disciplines for those providers who care for patients with perinatal OUD and affected infants.



Persons with perinatal OUD were recruited and individually interviewed using a semistructured interview guide. The interviews had 2 primary concepts of interest: (1) tobacco use by perinatal persons with OUD and (2) experiences of perinatal care. Questions were asked regarding participants' experiences with tobacco use and barriers to cessation and experiences with perinatal and neonatal care as childbearing persons with OUD. Prior analyses of this dataset to address perinatal tobacco use in childbearing persons with OUD were previously reported in the literature.19 The prior analysis discovered that participants wanted to quit smoking but reported many barriers, including feeling judged by nurses. This secondary analysis sought to explore the data related to care experiences using a qualitative descriptive methodology and content analysis framework.



The University of Kentucky Biomedical Institutional Review Board approved this study prior to recruitment. Eleven postpartum participants were recruited in person from the neonatal intensive care unit (NICU) during the infant's initial birth hospitalization for surveillance for NAS at an academic medical center. All participants were older than 18 years, were diagnosed with prenatal OUD, reported smoking during pregnancy, had an infant currently hospitalized for observation or treatment of NAS (a 5-day minimum hospitalization in the setting), and provided informed consent. Recruitment took place between December 2015 and April 2016. Exclusion criteria were (1) inability to read and speak English, (2) serious mental illness (eg, schizophrenia or suicidal ideation), or (3) current incarceration. Participants were informed about the purpose of the interviews. No participant withdrew from the study after enrollment. Interviews were conducted to saturation; briefly, the content of each interview was discussed between the interviewer and the senior (fifth) author as data collection was ongoing; data collection was stopped when no new concepts were emerging. Each participant received a $25 gift card.


Setting, interviewer, and data collection

After consenting to participate, women were interviewed by a female certified peer support specialist trained in interview techniques in a private, quiet location within the hospital or clinic prior to infant discharge. Peer support specialists are nonclinical, nonprofessional support persons with lived experience and experiential knowledge of the substance use recovery journey and are an integral component of recommended recovery treatment.20 The interviewer was further trained in interviewing techniques by the study senior author who has demonstrable qualitative expertise.


Interviews were voice recorded and each participant completed a single interview lasting less than 1 hour. A semistructured interview guide, as noted in Table 1, was used to elicit perspectives and lived experiences of perinatal patients with OUD, with explicit probing questions for positive or supportive care experiences. Following the interview, participants took a brief demographic survey. Interview voice recordings were transcribed and transcripts were checked against the original voice recording for accuracy. Participant recruitment continued with each transcript being reviewed prior to the next interview. Once no new information had been elicited across 3 participants, recruitment was halted.

Table 1 - Click to enlarge in new windowTable 1. Semistructured interview guide

The interviewer was employed in the role of peer support specialist by a local perinatal OUD treatment facility and was known to most participants; this enabled the development of a rapport and connection between the interviewer and participants. The use of semistructured interviews allowed participants to focus internally on experiences and to generate rich data, particularly in light of the safe and trusted setting established by the interviewer. Negative case analysis occurred with the participant who reported only positive/supportive experiences and the 2 participants who described their care experiences as almost entirely negative/nonsupportive. Peer checking was established via the involvement of the peer support specialist who is an in-group member of the population, as institutional review board requirements prevented the recontacting of participants for member checking after data were complete. The research team has diverse experiences with perinatal nursing and SUD treatment ranging from novice to expert in both domains. This allowed for extensive bias identification and correction. Researcher biases were addressed through extensive conversations with individuals across the continuum of treatment including clinical and social work providers, peer support providers, and affected persons. Conversations with mentors regarding implicit and explicit biases and addressing feelings regarding past experiences with substance use were an ongoing strategy during data analysis. Finally, to triangulate on themes, 2 researchers (first author, third author) independently coded the data and determined themes that were integrated to consensus and agreed upon by all authors.



Each transcript (n = 11) was carefully reviewed in entirety to provide an overview of participants' reported experiences. Sandelowski's qualitative description method is a pragmatic method that combines techniques adapted from other qualitative methods (eg, ethnography and grounded theory) and that seeks to stay close to the data and represent the data in everyday terms without regard to existing theoretical or philosophical beliefs. Qualitative description uses purposeful sampling, open-ended data collection, and content analysis.21 Content analysis examines the presence, meaning, and interrelationships between words, phrases, and themes within the data.


Analysis was conducted independently by a postdoctoral scholar (first author) and an undergraduate nursing student (third author). Codes were then reviewed in conjunction with the full data and excerpted quotes by the senior author, an experienced qualitative investigator with clinical experience in women's health and substance use. Data were assembled into a code report that was reviewed by the senior author and organized into themes. Themes are presented in a form consistent with classical grounded theory22 to conceptualize the process or action inherent in the nurses' doing and the participant's interpreting of the events. This adaptation of grounded theory approach is consistent with qualitative description.10 Theme definitions were established and tested against each participant quote in an iterative process to ensure both that themes were descriptive of the data and that themes were discriminant from one another. The first author and senior author reviewed the data, codes, and themes together and achieved consensus. Codes, themes, and quotations were then reviewed by all additional authors; all authors concurred with the findings and themes.



Eleven cis-gendered postpartum women with perinatal OUD were interviewed in a large academic medical center in the US southern region. Demographics are presented in Table 2. Briefly, participants identified as non-Hispanic White and ages ranged from 22 to 36 years. All interviews were conducted within 20 days of giving birth, and each participant had an infant currently hospitalized for observation and/or treatment of NAS and was in treatment for perinatal OUD that included medication-assisted treatment with buprenorphine or methadone.

Table 2 - Click to enlarge in new windowTable 2. Demographics

Participants largely reported positive experiences with prenatal, antenatal, and neonatal care for the current pregnancy/birth; however, many reports of supportive care were generalized, such as "I mean they was [sic] good," referencing how providers treated her child. Specific examples of supportive care experiences often required probing questions, whereas negative experiences were provided without being specifically elicited. Overall, one participant reported that her perinatal care experiences were entirely positive, that she experienced no judgment, and that she felt well supported throughout her perinatal course. Two others reported almost entirely negative experiences and perceptions of being judged harshly and treated differently from other childbearing persons. Counterexamples have been provided throughout to offer context to the themes and contextualize these women's experiences.


Four themes emerged from the qualitative data: Informing, relating, accepting, and holistic supporting.



The theme of informing is defined as the provision of teaching or providing information, either anticipatory or in real time. Some topics that participants identified as being particularly helpful were the peripartum process, hospital protocols, the role of social services and criminal justice, pain management, infant care and bonding, and aspects of neonatal withdrawal including NAS and what to expect in the NICU. Most participants consistently reported feeling empowered and benefiting from anticipatory teaching and being informed of what was happening during care activities. Anticipatory teaching was generally seen as beneficial, and as particularly helpful in reducing anxiety around the hospitalization experience related to the infant stay. One participant stated,


You know since coming to [prenatal care program], I knew a lot what to expect about the neonatal abstinence syndrome, what they scored for, you know some of the things they scored for... some information about NICU. Anyway, so that helped me.


Participants also reported positively on providers signaling openness to answering questions. One woman reported highly appreciating the informative nature of the care she received.


I'm one that asks a million questions and so I'd be like, "Well what's this for?" and "What are you doing that for?" And they'd tell me.


By contrast, several participants reported feeling poorly informed about aspects of care and the social and legal circumstances of prenatal substance use. One participant said:


Why didn't they tell me this could happen, you know? I never dreamed that it would be this bad.


about her child's NAS course. Others reported being misinformed about hospital policies, leading to negative experiences:


They told us we would have a room the whole time. Once social services came in, they kicked us out of our room,




They told us that there was (sic) only certain hours you could be in the nursery. We found out that you could be there the whole time other than like at 7:00 o'clock or 7:30 morning and night.


This highlights the need for providers to be clear and consistent in messaging about policies and protocols.



About half of participants reported having positive experiences with providers who connected to them on a personal level and/or provided a sense of community or supportive presence within the hospital environment. One participant stated,


They talked with me and laughed and joked and so I didn't feel uncomfortable.


For another participant, a provider who related a personal familial experience with SUD that was related to the participant's own experience was particularly memorable and helpful. Being relatable was also repeatedly expressed by participants who said providers were present in the moment rather than hurried. In the words of one participant,


She, no rushing, no rude, nothing.


On the other hand, multiple participants expressed counterexamples to relating. These participants reported feeling that providers were hurried or unprofessional during interactions. One participant summed up her negative experiences with several nurses:


There wasn't no need for it; they were just being rude.


When asked to clarify, the participant stated that during a perinatal emergency, nurses were called in from a different unit to establish intravenous (IV) access. The participant further clarified that the nurses said things like,


That I had ruined my veins, and it was awful that they had to struggle so hard to find one to get my IV,




One of them acted like I didn't deserve to have an IV because I had ruined my own veins.



Most participants spoke about feelings of acceptance and/or feelings of being treated similarly to other patients without regard to substance use history. Participants often contextualized positive experiences by providing examples of being judged to contrast positive interactions with clinicians. One participant stated her general experience with healthcare stigma and contrasted that to most of the providers she interacted with at her child's birth hospitalization:


And they kind of look down on you and stuff like that and which like I said, I only had that one nurse and everybody else was amazing.


Another stated,


Yeah, like they treated other parents differently. But the one lady, the blonde headed lady. She didn't.


A participant who reported particularly positive experiences throughout her perinatal course stated,


Do you know; I cannot tell you how many times I've heard that. How you know that's what we're here for; it doesn't matter. From the very beginning to the time we left.


In this context, the providers were "here for" providing supportive and nonjudgmental care. Another participant described healthcare providers that she saw as accepting of her substance use history and current recovery thusly about providers response to her being in treatment:


They make you feel like you are doing the right thing; that you've not done something bad. That you've done the right thing; that it's okay to ask for help.


By contrast, a participate who, had a largely negative experience reported intense feelings of being judged,


When somebody talks to you down and just don't care that you're still a person.


In one case, healthcare providers making assumptions about continued use for those in recovery was viewed as particularly harmful.


And I was like, ugh, I was dreading it you know and she was like, "Honey," she said, I, exact words; she said, "I don't see why you're so shaky for." I said, "What do you mean?" And then they drawed (sic) blood right here and I had a bruise. She said, "Because you stick yourself," and pointed, and touched my arm like that; she said, "You stick yourself." And I said, "Excuse me?" I said, "No I don't." She said, "Well, you do it to yourself so why should it bother us poking you?" And I started crying instantly right there because it made me very angry.


In another case, feelings of being judged led the participant to be concerned about her continued sobriety,


If you go in like I said and there's someone in there that's going to look at you and say, "Oh well you're just a junkie." Well, I'm going to look at myself and say, "Oh you're right."


Holistic supporting

The final key theme that emerged in the interviews of most participants were positive experiences with healthcare providers providing support for psychosocial needs, both for the childbearing person and for support persons (eg, partners, spouses, and friends). Several participants had major psychosocial barriers, including food insecurity, transportation problems, and homelessness. Support provided to address these psychosocial barriers were repeatedly identified by participants as positive experiences. For example, a participant with transportation issues said,


They would help you out you know and they even worked with me because they knew about my ride situation.


Another reported:


Well sometimes the coordinators would give us these [food] vouchers. So yeah, that helped a whole lot. Like we would get like four apiece and that would buy us for a week.


Healthcare providers were also sensitive to spiritual and social support needs for some women. One participant related the following story:


She just prayed. She didn't ask me my name; she didn't ask me if she could; she just put her hands on me and prayed ... But she helped me. Yeah, that was pretty nice. Not everybody does; I mean you wouldn't imagine somebody doing that.


Another reported being moved upon request to a room closer to another woman from her treatment program who was hospitalized at the same time to allow them to support one another:


They moved our rooms next to each other in the children's [hospital].


One participant who deemed her experience to be negative overall related a story about her support persons (including the baby's father) being barred from the nursery while she was undergoing a medical procedure for a complication:


They wouldn't let [infant's father]; well, they wouldn't let him in the nursery. He didn't get to give him his bath; none of that normal stuff that dad gets to do right after the baby's born. They wouldn't let him in because they had left [infant's father's] bracelet on my bed; they left it; they never gave it to us.



Participants reported on 4 themes of supportive care demonstrated by clinicians: informing, relating, accepting, and holistic supporting. Despite many personal and psychosocial challenges participants faced related to OUD diagnosis and treatment, most participants reported on some positive/supportive aspects of care and participants were largely complementary to clinicians and self-aware regarding substance use and recovery. Yet participants also reported many negative interactions with providers, including feelings of judgment, being treated differently from other women, and being discouraged from participating in infant care.


A recent systematic review revealed that 6 studies with a mix of qualitative and quantitative methodologies concurred that supportive, relational care improved treatment adherence and outcomes for mothers and infants.8 However, there is currently limited research examining how persons with perinatal OUD perceive or respond to care or what such persons deem supportive. Prior qualitative research in this population has largely focused on providers and systematic issues such as accessibility of treatment and treatment preferences.6,7,9,10 Studies have also examined barriers and facilitators of treatment seeking,11 but limited literature exists to explore how perinatal care and treatment are perceived by those who do seek treatment.12 Thus, care may be generalized rather than tailored to this population despite the specialized needs, barriers, and social stigma highlighted in the literature and widely acknowledged by professional organizations.18 The findings of this study support that while supportive care was received by most participants, experiences of negative, nonsupportive, and potentially harmful care were common, experienced by 10 of the 11 participants.


Participants in this study more readily related negative care experiences and were likely to report positive experiences in relation to negative experiences from other providers. This finding is consistent with the complex, bidirectional association between negative affectivity, distress intolerance, and heightened response to negative stimuli in SUDs in men and women.23 Briefly, individuals with SUDs may have enhanced attention to negative emotional stimuli as a type of cognitive bias, and this heightened attention may in turn feed into negative affectivity and emotional distress.23 This may indicate negative experiences are more attended to and/or impactful in this vulnerable population.23 Thus, providing supportive care and protecting patients from experiences of negative, stigmatizing, and judgmental care become even more important for enhancing maternal and infant outcomes.


However, heightened attention to negative stimuli did not explain the full range of negative experiences women reported. Consistent with prior literature, participants reported a range of negative and even hostile experiences from caregivers.17 These experiences are not consistent with ethical standards of care or the development of a therapeutic relationship and may be a product of implicit and/or explicit biases on the part of caregivers that require practice, education, and self-reflection to address.24 Researchers and health entities are increasingly calling for an end to stigma and punitive responses (eg, criminal prosecution) for SUD.15 Indeed, calls abound to adjust the language around SUDs to reduce stigma.25 This study supports the need for continued efforts to reduce stigma in perinatal care of persons with OUD; nurses who provide perinatal care to vulnerable persons with OUD must engage in ethical practice geared toward supporting and protecting patients and infants from the harmful effects of stigma.


Recent legislative efforts, such as the Families First Prevention Act, that seek to maintain family cohesion in cases of perinatal substance use mean that persons with perinatal OUD will increasingly be parenting after birth hospital discharge and/or in the early childhood period.26 Biases about SUD among clinicians has previously been identified as a barrier to participation in infant care.17 Similarly, some participants in this study reported a lack of accurate and timely information as a barrier to infant bonding. Others reported feelings of being a burden or a disruption to care in the NICU when nurses and other providers did not provide accepting and/or relating. Enhancing informing, accepting, and relating in nursing care for patients with perinatal OUD may support policy initiatives to maintain and enhance family cohesion.


Some experiences participants reported as overall positive examples of care in this study may have crossed ethical boundaries for appropriate, therapeutic nursing care. For example, one nurse reportedly sat with a patient for over an hour and cried openly while sharing personal experiences with SUD. This may constitute inappropriate self-disclosure and emotional involvement, forming a dual relationship and taking the focus off the patient.27 Such activity, while viewed positively by the participant in this case, may inappropriately burden patients who are already dealing with the major psychological, social, and legal challenges posed by SUD and the effects on infants. Nurses must maintain professional boundaries and build appropriate, therapeutic relationships while engaging in relating and holistic supporting practices in this population. Additional staff training on perinatal care units where persons with OUD are treated, including bias training and a review of ethical standards of care, is warranted. Furthermore, one participant reported an intensely negative experience from nurses who were brought in from another unit to provide technical support in the insertion of an IV. Nurses and administrators have a duty to protect patients from inappropriate interactions with staff who have not been trained to provide specialized care for persons with OUD. Thus, more widespread training and/or development of procedures for bringing in external staff without advanced training may also be warranted.


There are presently no comprehensive models of care for persons with perinatal OUD. The findings of the present study form a foundation to begin building a truly patient-centered model of care grounded in patient perspectives and lived experiences consistent with current clinical practice guidance for persons with perinatal OUD and affected infants.28 Future research must focus on building a concise, comprehensive model to guide the provision of nursing care to this vulnerable population and affected infants, with strong emphasis on ethical, therapeutic relational care that supports recovery and the adoption of the parenting role. Implications for research, policy, and practice are summarized in Table 3.

Table 3 - Click to enlarge in new windowTable 3. Implications for practice, policy, and research


Persons with OUD comprise a heterogenous population with widely divergent life experiences, socioeconomic status, social environments, and support needs. The primary interviews were conducted to saturation; however, it is always possible that additional context was missed by the relatively small sample sizes inherent to qualitative research. Despite the intentional focus of this study on persons who reported use of tobacco, this sample is likely representative of the larger population of persons with perinatal OUD, as up to 95% of pregnant persons with OUD report tobacco use.29 The sample of this study was limited to White, non-Hispanic cis-gendered women with mixed representation of rural and urban backgrounds; this was due to the characteristics of patients at the recruitment site. This sample is therefore not representative of all childbearing persons with OUD and findings must be applied with due caution to other populations. Previous intersectional interaction has been found between sexuality, race, and gender contributing to disparities in SUD.30 Thus, perspectives of a more diverse group of persons with perinatal OUD should be solicited, including sexuality, race, ethnicity, and gender identity.


This study did not account for postpartum depression. Given the negative affective interpretation bias associated with depression,31 this may confound our discussion regarding the potential causes of negative attentional bias specific to patients with SUD. Furthermore, the present study was unable to provide direct comparison or contrast between childbearing persons with and without OUD in the evaluation of positive or negative care experiences. While the sample for this study was adequate to describe the experiences of the participants and to begin conceptualization of processes that may support the development of a model of care, a larger sample of women and triangulation with the experiences of clinicians are needed.



Persons with perinatal OUD reported a range of positive and negative care experiences. Positive experiences were organized into 4 themes-informing, relating, accepting, and holistic supporting-with examples and counterexamples provided. No comprehensive care models specific to women with perinatal OUD exist despite evidence that supportive and relational care improves outcomes for persons with perinatal OUD and affected infants. This study provides evidence on how persons with perinatal OUD perceive care and offers implications for clinical practice, policy, and research.




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opioid-related disorders; patient-centered care; perinatal care; social stigma; substance-related disorders