Understanding Barriers to Congenital Syphilis Prevention and Care Through Provider and Patient Perspectives

Context Congenital syphilis (CS) remains a significant public health challenge in the United States, with sharply rising incidence.

Objective This study explores barriers to CS prevention and care by investigating perspectives from prenatal healthcare providers and mothers of diagnosed infants.

Study Design and Analysis Interviews were conducted with prenatal healthcare providers and mothers in Chicago, IL. The transcribed interviews were then analyzed using standardized qualitative methods.

Setting or Dataset Interviews were conducted in Chicago, IL.

Population Studied The study included ten physicians and advanced practitioners and seven mothers who had delivered infants diagnosed with CS.

Intervention/Instrument In-depth, semi-structured interviews served as the primary instrument for gathering qualitative data.

Outcome Measures This study focused on key barriers to CS prevention and care as perceived by healthcare providers and mothers, and other occult factors associated with its rise. It evaluated the nature and impact of stigma, health literacy, effective communication with healthcare providers, and the emotional responses associated with a CS diagnosis.

Results Whereas most providers noted public and self stigma as barriers to mothers seeking care, mothers mentioned stigma in the context of disclosure of their diagnosis to loved ones. Mothers noted withholding their diagnosis due to feelings of shame, guilt, or embarrassment. Common emotional responses among mothers included anxiety, guilt, disappointment, shock, and depression. Providers also identified stigma from other healthcare professionals and the public, as well as systemic stigma associated with the label of “syphilis.” Both providers and mothers reported limitations in patient understanding and knowledge. Mothers reported a wide range of provider education efficacy during the prenatal period, including none, poor, and good. However, most mothers reported receiving clear education about their condition during delivery, positive delivery experiences, and helpfulness from the clinical team.

Conclusions Effective prevention and management of CS are hindered by complex psychosocial factors, including structural stigma from healthcare providers, disclosure stigma from the patients’ community, and health literacy issues. Enhancing targeted educational interventions and stigma reduction strategies during the prenatal period could be pivotal in reversing the rising trend of CS.