Background The current opioid crisis in the United States impacts broad population groups, including pregnant women. Opioid use during pregnancy can affect the health and wellness of both mothers and their infants. Understanding women’s efforts to self-manage opioid use or misuse in pregnancy is needed to identify intervention points for improving maternal outcomes. Objective This study aims to identify the characteristics of women in an online health community (OHC) with opioid use or misuse during pregnancy and the self-management support needs of these mothers. Methods A total of 200 web posts by pregnant women with opioid use participating in an OHC were double coded. Concepts and their thematic connections were identified through an inductive process until theoretical saturation was reached. Statistical tests were performed to identify patterns. Results The majority of pregnant women (150/200, 75.0%) in the OHC exhibited signs of misuse, and 62.5% (125/200) of the participants were either contemplating or pursuing dosage reduction. Self-managed withdrawal was more common (P<.001) than professional treatment among the population. A total of 5 themes of self-management support needs were identified as women sought information about the potential adverse effects of gestational opioid use, protocols for self-managed withdrawal, pain management safety during pregnancy, hospital policies and legal procedures related to child protection, and strategies for navigating offline support systems. In addition, 58.5% (117/200) of the pregnant women expressed negative emotions, of whom only 10.2% (12/117) sought to address their emotional needs with the help of the OHC. Conclusions OHCs provide vital self-management support for pregnant women with opioid use or misuse. Women pursuing self-managed dosage reduction are prone to misinformation and repeated relapses, which can result in extreme measures to avoid testing positive for drug use at labor. The study findings provide evidence for public policy considerations, including universal screening of substance use for pregnant women, emphasis on treatment rather than legal punishment, and further expansion of the Drug Addiction Treatment Act waiver training program. The improvement of web-based platforms that can organize geo-relevant information, dispense clinically validated withdrawal schedules, and offer structured peer support is envisioned for harm reduction among pregnant women who opt for self-management of opioid misuse.

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BACKGROUND The current opioid crisis in the United States impacts broad population groups, including pregnant women. Opioid use during pregnancy can affect both the health and wellness of women and their infants. OBJECTIVE Our research is driven by the overarching vision of improving the quality of pregnancy for women with substance use disorder. The aims of this study were to (1) contextualize the social environment and healthcare experiences of the pregnant women who use opioids in order to inform program planning for specialized obstetric care and resources; and (2) identify knowledge gaps of the study population that may be addressed by patient education via online health communities. METHODS We conducted a qualitative study of public online discussion posts made by pregnant women with opioid use to understand their experiences and challenges. Three researchers performed three rounds of iterative open coding of randomly selected posts from MedHelp.org. Concepts and their thematic connections were identified through an inductive process. Theoretical saturation was reached within approximately 350 posts. RESULTS The study population had four levels of experience with opioid use: opioid naïve, opioid dependent, opioid misuse, and in treatment. Women engage in online discussions with peers due to several offline challenges. Regardless of their experience level, the women fear that opioids may harm their fetuses and express a desire to know more about the drugs’ effects. The opioid dependent and opioid misuse groups experience additional barriers to recovery: their social environment presents several risk factors including isolation and lack of social support, influences of negative relationships, and pressure to meet societal expectations. They display signs of experiencing guilt and are prone to internalized stigma. They have difficulty obtaining and sustaining specialized obstetric care offering medication-assisted treatment. In the absence of adequate professional care, they resolve to attempt self-guided opioid withdrawal, often misinformed, in an effort to protect their fetuses and to avoid legal complications. They seek peer experiences from the online health community to supplement their difficulty finding medical and legal information from other sources. CONCLUSIONS Women with opioid use problems in an online health community often lack social support and the knowledge necessary to sustain a healthy pregnancy while combating physical and social concerns related to their opioid use. Increased resources in high-risk pregnancy care and greater transparency in hospital reporting protocols is called for to re-align patients and providers. In addition to better engaging women who use opioids in both prenatal care and substance use disorder treatment, the improvement of online platforms that dispense valid information on drug safety, withdrawal schedules, and local neglect-reporting regulations is much needed for those who do not seek professional care.