Identifying Self-Management Support Needs for Pregnant Women With Opioid Misuse in Online Health Communities: Mixed Methods Analysis of Web Posts (Preprint)

Abstract

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.