and infant separation as a form of trauma.¹⁶˒¹⁷ While many providers screen for alcohol and illicit opioid use and other substances, not all providers or programs operate and treat perinatal substance use consistently.¹ Research has shown that a trusting alliance, compassionate care models, and collaboration among providers and perinatal women with substance use histories are associated with higher care retention.¹ Yet, for over 45 years, studies and court proceedings¹⁶˒¹⁷˒¹⁸˒¹⁹˒²⁰˒²¹ continue to reveal a disconnect between providers and perinatal patients with substance use histories.²˒¹⁰ Perinatal women with substance use histories continue to experience greater discrimination and bias in policies and healthcare settings compared to other populations and conditions.¹˒²² Specifically, studies that have examined race, socioeconomic statuses, and perinatal substance use outcomes at the time of delivery indicate that women of color,¹⁷˒²⁰˒²¹ uninsured,²³ and lower socioeconomic status²⁴˒²⁵ are more likely to be required to submit a urine sample for drug testing, referred to child welfare services, or experience criminalization when screened for substance use.¹⁷ When these overarching factors (stigma, fear, hospital trauma) exist, the individuals are more likely to internalize their shame and guilt, and may return to use and refuse to trust providers.¹⁰˒¹⁷

Early identification followed by a therapeutic response of brief intervention and referral to maternal-infant and co-occurring treatment is recommended by the U.S. Preventive Services Task Force and is effective in reducing substance use in pregnancy.¹˒¹³ While numerous validated screeners are acceptable for identifying problem substance use,¹⁰˒¹³ the 5Ps Screen for Alcohol/Substance Use tool has been widely accepted and used due to its indirect line of questions and specificity for the perinatal period.¹¹˒²⁶ The 5Ps Screen for Alcohol/Substance Use tool contains questions that query substance use by the pregnant woman’s parents, peers, partner, in her past, and/or current pregnancy.¹¹˒²⁶ Like any screener, how it is introduced may influence patients’ responses to the questions. While universal screenings are primarily used to detect perinatal substance use, screenings create a clinical pathway to address other SUD-related conditions among maternal-infant and treat co-occurring perinatal conditions.¹˒²˒¹⁸˒²⁷ As a result, creating an opportunity to optimize behavioral (overdose and mental health conditions) and physical health (postnatal and postpartum) outcomes throughout the perinatal trajectory.¹˒²˒⁸˒¹⁰ While previous qualitative studies have included patients’ and obstetricians’ reports,¹˒²⁸˒²⁹ there is minimal research that has investigated factors related to how healthcare providers introduce the screener and influence the ways pregnant and birthing patients with substance use problems may experience the screening questions.¹˒⁸ The purpose of the qualitative study was to improve the substance use screening experiences and accuracy by revising a screening prompt based on the input of patients and staff with substance use disorders.

Methods

All study procedures were approved by the University of North Carolina at Chapel Hill Institutional Review Board (IRB# 22-2915). Individuals consented to participate in the study.

Participants

All participants were recruited using two forms of purposeful sampling: critical case and homogeneous sampling. Purposeful sampling is an intentional approach to uplift the voices of populations who are not always given opportunities to be heard and gather information from those who are informed about the specific topic of focus. Critical case sampling was used to identify perinatal patients with substance use histories. Participants were selected from those residing in a perinatal substance use disorder residential treatment program and engaging in a specific group therapy in North Carolina (n=6). Participants provided informed consent for the evaluation team to ask questions about the 5Ps screening prompt in a group setting as a form of quality improvement and service provision. Homogeneous sampling was used to recruit peer support specialists, who were working in a healthcare system or perinatal SUD residential treatment

program, and paraprofessionals and qualified professionals (QPs) working in a perinatal and maternal outpatient or residential programming in North Carolina (n=14) based on their connection to the perinatal SUD community. Six participants were in the perinatal patients with substance use histories focus group, eleven staff, and three individual interviews were conducted with two peer support specialists and one QP. All individuals who were approached for participation agreed, and no potential participants were ineligible or refused. EH led the focus groups and interviews. To reduce participant influence and bias, none of the participants in the study were receiving clinical services, clinical staff training, or supervision from EH.

Treatment Setting and Time

The two focus groups and individual interviews were collected over a week via a HIPAA-compliant telehealth platform in December 2022. The facilitator of the treatment group educated the perinatal participants with substance use histories about quality improvement and assurance efforts to evaluate service provision. The facilitator informed the perinatal participants with substance use histories that the research and evaluation team aimed to gain a deeper understanding of patients’ experiences when seeking care in a healthcare setting. The group provided consent to share their experiences. Treatment groups are closed sessions among perinatal women and families actively enrolled in an enhanced outpatient program and residential program. The HIPAA-compliant Zoom platform was utilized due to the coronavirus pandemic and safety measures related to evaluation and quality improvement tasks. Similarly, the research and evaluation team identified peer support specialists and qualified professionals who have worked in a high-risk prenatal SUD care clinic, a perinatal SUD outpatient program, or a residential program for SUD in North Carolina. The peer support specialists and qualified professionals in the focus group met via the HIPAA-compliant Zoom platform. The three individual interviews took place in person, adhering to social distancing requirements in a conference space at the outpatient program. The outpatient treatment setting is uniquely designed for pregnant and parenting women and their children and families, offering childcare and parenting support when needed.

Procedures

EH gathered information from patients in a perinatal and maternal program (n=6) in a one-hour focus group via a HIPAA-compliant telehealth platform. Each participant read a draft prompt that was developed by a Working Group at our institution as part of the “comprehensively lessening Opioid Use Disorder impact” prenatal pilot initiative of the Perinatal Quality Collaborative of North Carolina:

“I have several questions for you to complete about substance use. We ask all our pregnant patients these questions because we care about all aspects of your health. The more you can tell us about your health, the better we will be able to care for you and your pregnancy. The provider will talk with you about your answers shortly. If you answer yes to the questions included in this screener, we will provide additional resources and support. If you have more questions regarding how this information will be used, talk with your healthcare provider.”

In addition to the main prompt, perinatal participants with substance use histories were asked three follow-up questions:

1. Would you feel comfortable answering the following questions in a healthcare setting as a pregnant or birthing person with a history of substance use during pregnancy or postpartum?

2. If not, what would increase the chances for a pregnant or birthing person with substance use disorder to feel comfortable answering these questions?

3. Would you add or remove language from the original prompt?

Information from the peer support specialists, paraprofessionals, and qualified providers was

gathered in a one-hour focus group via a HIPAA-compliant telehealth platform. Similarly, read the prompt and were asked the two follow-up questions below:

1. If not, what would increase the chances for a pregnant or birthing person with substance use disorder to feel comfortable answering these questions?

2. Would you add or remove language from the original prompt?

DATA ANALYSIS

Thematic analysis was conducted using information from the follow-up questions to adjust the original prompt. Coding was done by hand, and the research team generated initial codes upon re-reading the text. Coding was done broadly to allow for as many potential themes as possible. Codes were then sorted into potential themes, and connections between themes were discussed and finalized with the co-authors. After two focus groups and three individual interviews, the same themes emerged:

1. Fear of child protective services,

2. Provider competency,

3. Provider compassion,

4. Methods to improve the assessment/prompt,

5. Concerns related to CPS,

6. Challenges working with healthcare settings.

Albeit a small sample size, the determination of saturation was met, given that no new themes emerged. Participants were provided with a written copy of the qualitative data collected during the two focus groups to ensure accuracy of the language used to initiate a revision prompt. Similarly, the three individual sessions were also provided with data collected from their interviews to ensure the language captured reflected the participants’ words. Once the perinatal patients with substance use histories, peer support specialists, paraprofessionals, and QPs confirmed accuracy, the evaluation team compiled information from the two focus groups and three individual sessions to create a revised suggested 5Ps prompt based on the themes identified and reflecting the language provided by participants. To ensure accuracy and inclusion of all voices, a member-checking process was conducted to ensure the accuracy and approval from all participants of the newly revised prompt. The member checking process was conducted by EH reaching out to all participants (N=20) to review and give final approval of the revised prompt.

Results

Six themes were identified from the participant groups. The three themes that emerged from the perinatal participants with substance use histories group were fear of CPS, provider competency, and provider compassion. The three themes from the peer support specialists, paraprofessionals, and QPs (staff) included methods to improve the assessment, concerns related to CPS, and challenges when working with healthcare professionals. Two themes overlapped and shaped the final outcomes found in the discussion section. The full results can be found in Table 1.

PARTICIPANT THEMES: PERINATAL WOMEN WITH SUBSTANCE USE PROBLEMS

Theme 1: Fear of Child Protective Services.
Participants in the group discussed fear of caregiver-infant separation, “fear of CPS getting involved.” It is well-documented that perinatal women are hesitant to seek care due to loss of custody or parental rights³⁰˒³¹. The perinatal participants with substance use histories group also indicated mistrust among CPS workers, and many participants agreed that “even if CPS says that reunification is the plan, that isn’t always the case.” While keeping custody is the primary goal when CPS is involved, not all women can regain custody of their infant or child if a CPS report has been made. Lastly, other subthemes related to CPS were the emotional trauma that results from the CPS report and involvement, sharing that “(CPS) disrupts the kid’s mental health and mom’s mental health.”