Role of electronic health record in stigma experiences, trust, and care decisions by women with history of pregnancy and substance use disorder: a qualitative study of perceptions of clinical note language

Objectives Stigma impacts outcomes across stigmatizing conditions, including substance use disorders (SUDs). Recent policy changes give patients rapid access to clinical notes in the electronic health record (EHR), which may include stigmatizing language. The objective of this study was to assess the perspectives of women with history of pregnancy and SUDs on typical language used in clinical notes. Materials and Methods Women with a history of pregnancy and SUD were recruited through an online crowd-sourcing platform. Respondents viewed examples of clinical language and answered survey questions about perceived stigma. An inductive approach was used to analyze open-text responses, and themes were developed. Results Three hundred seventy survey respondents wrote a response to at least one open-text question. Thematic analysis yielded 4 major themes: (1) anticipation of future stigma facilitated by EHR documentation can affect patients’ care decisions for themselves and their babies; (2) documented SUD history could have short- and long-term effects on patients’ experience of stigma and discrimination, especially in labor and delivery; (3) phrases using “denies” and quotes within quotation marks could be perceived as stigmatizing and decrease trust in providers; (4) nonstigmatizing language and acknowledgement of recovery in notes can facilitate positive experiences for patients, but patients want more acknowledgement of recovery and positive language. Conclusion Electronic health record documentation can modulate stigma experiences for women during and after pregnancy through stigmatizing language in clinical notes and facilitating discrimination, decreasing trust in providers and negatively impacting health outcomes. Raising providers’ awareness of nonstigmatizing and positive language or implementing technology to prompt nonstigmatizing terminology could contribute to positive experiences among women with a history of pregnancy and SUD.