Perinatal healthcare experiences of pregnant and parenting people with a history of substance use disorder: a qualitative study

BackgroundClinical guidelines in the United States (U.S.) recommend a patient-centered approach to healthcare for pregnant people with substance use disorders (SUD); however, pregnant people with SUD often describe experiencing stigmatization and shame when seeking prenatal care. We explored the perspectives of pregnant and parenting people engaged with SUD treatment regarding their experiences with healthcare providers during the perinatal period to improve guidance for patient-centered care.Materials and methodsUsing an adapted phenomenological approach, we conducted in-depth interviews with 22 pregnant and parenting people recruited from inpatient or outpatient substance use treatment centers in the U.S. state of Colorado. We developed an interview guide to explore participants' experiences during pregnancy, childbirth, and postpartum. We audio recorded, transcribed, and validated interviews for analyses. A codebook was developed using an iterative process. Three coders analyzed the data and synthesized data into thematic memos.ResultsParticipants reported challenges within the healthcare system, including barriers to receiving services, connection to or education on resources, challenges in and reasons for sharing their history of substance use with healthcare providers, provider reactions to this information, and the impact of providers' response to knowing about their substance use history. Participants described shame regarding their substance use but also a strong desire to ensure the health of their infants. This desire motivated them to share their history of substance use with healthcare providers. When participants perceived nonjudgmental and empathetic responses, they reported feeling pride and empowerment. Participants who reported judgmental responses from providers stated that it made them less likely to share and engage with other healthcare providers in the future.ConclusionThe perspectives and experiences of people engaged in SUD treatment can inform the implementation of clinical guidelines for patient-centered care for pregnant and parenting people in perinatal healthcare settings. Learnings from this study addresses ongoing challenges to compassionate care during this critical window, leading to disengagement of patients. Support through connection of resources can be helpful for ongoing recovery. Recommendations are made to establish trust through transparency and non-judgmental care and to reinforce receipt of appropriate healthcare services.