Like and share: A mixed-methods cross-sectional survey of social media use during monochorionic diamniotic twin pregnancies.

Problem: Monochorionic-diamniotic (MCDA) twin pregnancies are high-risk, requiring specialized monitoring and procedures to screen for and treat potential complications.

Aim: This study examined decisions to use social media among those who have experienced MCDA pregnancies and how these groups influenced treatment and management decisions for these rare, complicated pregnancies.

Methods: An online mixed-methods, retrospective survey, was completed in 2021 by 624 participants who experienced MCDA pregnancies within 5 years of the study; participants were recruited from online MCDA pregnancy groups on Facebook and Twitter. Data was analyzed using descriptive statistics and thematic analysis.

Findings: Sixty-nine percent of participants used social media to communicate during their MCDA pregnancies, an 18 increase from before pregnancy, and most (74.2 %) used online support groups during pregnancy. Thematic analysis revealed participants used social media primarily to find others with similar experiences, learn more about MCDA pregnancies, and obtain guidance. Most would also recommend joining social media during a similar pregnancy. Nearly half indicated that social media influenced MCDA pregnancy management and treatment decisions - like decisions regarding birth plans, providers, and MCDA-related complications. Several participants cautioned that support groups can be triggering when negative stories are shared.

Conclusion: Social media can provide information, support, and improve advocacy for those experiencing MCDA pregnancies. Providers may consider online groups as another source of support for pregnant people and be prepared to address questions that may arise. This study also reveals opportunities for increased and/or improved patient educational materials and patient-provider communication related to MCDA pregnancies.