Table of Contents
Monochorionic Diamniotic Twins: What Prospective Parents Want To Know And The Influence Of Social Media
Shared Decision Making: In late 2021, an online survey targeted English-speaking adults with an MCDA pregnancy in the past five years. Participants shared how social media influenced their pregnancy. Data was analyzed using both qualitative and quantitative methods.
Our research provides care providers with vital information on howprospective parents find vital information about monochorionic diamniotic (MCDA) twin pregnancies, focusing on understanding the associated risks and how to make informed decisions. It emphasizes the importance of clear communication between healthcare providers and parents, ensuring that parents are actively involved in their care. With many turning to social media for support, we also explore how these online communities are shaping pregnancy management and influencing decision-making.
Key Points:
- Understanding MCDA Twin Risks:
- MCDA pregnancies carry heightened risks, such as twin-twin transfusion syndrome (TTTS) and growth issues. Regular monitoring is essential to manage these complications effectively, and while preterm birth is common, proper care can lead to positive outcomes.
- Collaborative Decision-Making:
- Shared decision-making between healthcare providers and parents is crucial, especially in high-risk situations. This approach ensures that medical decisions reflect the parents’ values, needs, and concerns, creating a stronger partnership in their care.
- Social Media’s Role:
- Many parents turn to social media for emotional support, information, and advice. A 2021 survey revealed that 68.5% of parents used social media during their MCDA pregnancy, seeking connection with others, managing anxiety, and learning about their pregnancy.
- Survey Findings:
- Common complications during MCDA pregnancies include selective intrauterine growth restriction (sIUGR), TTTS, and umbilical cord issues. Social media played a significant role in influencing decisions on birth plans, healthcare advocacy, and choosing providers.
- Balancing Risks and Benefits of Social Media:
- Benefits: Social media offers valuable emotional support, helps parents navigate pregnancy management, and provides a platform for advocating for their care.
- Risks: The spread of misinformation and anxiety caused by negative stories can pose challenges, highlighting the importance of healthcare providers engaging in conversations about online information.
- Advice for Providers:
- Our research encourages healthcare providers to embrace the discussions parents are having online. Acknowledging and discussing the information parents find can strengthen communication and ensure parents feel supported throughout the decision-making process.
Our work aims to connect medical expertise with the growing influence of digital resources, offering a deeper understanding of how MCDA parents navigate both the challenges of their pregnancy and the online communities they rely on for support.
Feel free to share our work online – you can even tag @tapssupport on social media (LinkedIn, Twitter, Facebook and Instagram) and use the #SocialMediaMCDATwins hashtag (we promise to like and share!) Download a social media image here.
Presentation
Social Media Resources
Here’s a list of groups, communities, support organizations and “twinfluencers” on social media
Facebook Communities
Twin Anemia Polycythemia Sequence (TAPS) Support *
Support Organizations
Additional Resources
International Council of Multiple Birth Organizations(ICOMBO) *
European Foundation for the Care of Newborn Infants (EFCNI) *
Please note: These listings are not considered an endorsement, and should not be treated as advice. We have provided these as examples of twin-related content. Listings marked with a star are verified evidence based sources..
About the Authors
As individuals who have personally navigated the complexities of monochorionic diamniotic (MCDA) twin pregnancies, we understand the challenges prospective parents face. Through our shared experiences, both as parents and researchers, we have seen firsthand the emotional, medical, and informational needs that arise during these high-risk pregnancies. One thing that stands out is the immense value of clear communication and shared decision-making between parents and healthcare providers. Parents of MCDA twins, who are often thrown into a world of unfamiliar medical terms and high-stakes decision-making, benefit greatly from being active participants in their care. The balance of explaining complex risks—like TTTS and growth complications—while empowering parents to make informed choices is crucial.
In today’s world, parents often turn to social media and online communities to fill gaps in knowledge and support. These platforms provide an invaluable space for sharing experiences, asking questions, and receiving emotional encouragement. Our research revealed that more than half of the parents who participated used social media to guide their decisions regarding pregnancy management and care. However, while these online groups offer significant benefits, they also carry risks, such as the spread of misinformation or anxiety from negative experiences. We believe that healthcare providers can strengthen their relationship with parents by acknowledging and discussing the information found online, fostering a collaborative environment where both medical expertise and personal research come together for the best possible outcomes.
Stephanie Ernst facilitates conversations between parents and professionals about the unique needs of complicated twins and multiple birth families and their challenges. Founder of TAPS Support, and experienced twin parent, her passion is breaking down medical jargon and ensuring that people have quality information about multiple births from before birth, to beyond the NICU.
stephanie@tapssupport.com
Rebecca Fischbein, PhD., NEOMED Associate Professor in the Department of Family and Community Medicine, teaches research, evaluation, and biostatistics to medical, graduate, and post-graduate students. She serves as PI, Co-PI and project evaluator for federally, state, foundation, and university funded projects. Her research examines patient experience, health disparities and critical gaps in care. Her recent work develops and implements health professions focused disability-related education and research.
rfischbein@neomed.edu
Lauren Nicholas, PhD., D’Youville University is an Associate Professor in the Department of Social Sciences, teaches in the areas of social epidemiology, health disparities, public health, and health policy. Her research is dedicated to bringing awareness and better screening protocols and treatment access to the monochorionic-diamniotic twin population.
nicholas@dyc.edu
Our Publications
Publication pending: Like and Share: A mixed-methods cross-sectional survey of social media use during monochorionic diamniotic twin pregnancies, R Fischbein, S Ernst, L Nicholas.
Ernst, S., Fischbein, R., & Nicholas, L. Monochorionic Diamniotic Twins: What Prospective Parents Want To Know And The Influence Of Social Media [Presentation].
Twins Congress 2024 ( the Joint 7th World Congress on Twin Pregnancy: The 19th Congress of the International Society for Twin Studies (ISTS) ) 26 – 28th September, 2024, Assisi, Italy
Ernst, S., Aultman, J., Fischbein, R., & Nicholas, L. What about the caregivers? The ethical considerations for TAPS screening and follow up care [E-poster].
Twins Congress 2023 ( the Joint 6th World Congress on Twin Pregnancy: The 18th Congress of the International Society for Twin Studies (ISTS) ) 15-17 June 2023, Budapest, Hungary.
J.M. Aultman, S. Ernst, R. Fischbein, L. Nicholas,
An ethical examination of twin anemia polycythemia sequence screening,
Volume 27, 2023, 100881, ISSN 2352-5525, https://doi.org/10.1016/j.jemep.2023.100881.
Fischbein, Rebecca, et al. “Patient-Reported Monochorionic-Diamniotic Twin Pregnancy Management and Experiences During the COVID-19 Pandemic: A Mixed-Methods Cross-Sectional Survey.” Journal of Patient Experience, 2022, https://doi.org/10.1177/23743735221133634.
Nicholas, L.; Fischbein, R.; Ernst-Milner, S.; Wani, R. Review of International Clinical Guidelines Related to Prenatal Screening during Monochorionic Pregnancies. J. Clin. Med. 2021, 10, 1128.
https://doi.org/10.3390/jcm10051128
Nicholas, L.; Fischbein, R.; Aultman, J.; Ernst-Milner, S. Dispelling Myths about Antenatal TAPS: A Call for Action for Routine MCA-PSV Doppler Screening in the United States. J. Clin. Med. 2019, 8, 977. https://doi.org/10.3390/jcm8070977.
Fischbein RL, Nicholas L, Kingsbury DM, Falletta LM, Baughman KR, VanGeest J. State anxiety in pregnancies affected by obstetric complications: A systematic review. J Affect Disord. 2019 Oct 1;257:214-240. doi: 10.1016/j.jad.2019.07.007. Epub 2019 Jul 4. PMID: 31301626.
Falletta L, Fischbein R, Bhamidipalli SS, Nicholas L. Depression, anxiety, and mental health service experiences of women with a twin-twin transfusion syndrome pregnancy. Arch Womens Ment Health. 2018 Feb;21(1):75-83. doi: 10.1007/s00737-017-0758-1. Epub 2017 Jul 31. PMID: 28761987.
Fischbein R, Nicholas L, Aultman J, Baughman K, Falletta L. Twin-twin transfusion syndrome screening and diagnosis in the United States: A triangulation design of patient experiences. PLoS One. 2018 Jul 5;13(7):e0200087. doi: 10.1371/journal.pone.0200087. PMID: 29975770; PMCID: PMC6033438.
Nicholas L, Fischbein R, Falletta L, Baughman K. Twin-Twin Transfusion Syndrome and Maternal Symptomatology-An Exploratory Analysis of Patient Experiences When Reporting Complaints. J Patient Exp. 2018 Jun;5(2):134-139. doi: 10.1177/2374373517736760. Epub 2017 Nov 8. PMID: 29978030; PMCID: PMC6022942.
Nicholas LD, Fischbein RL, Bhamidipalli SS. Twin anemia-polycythemia sequence and routine monitoring practices amongst maternal-fetal medicine specialists in the United States: an initial investigation. J Perinat Med. 2019 May 27;47(4):388-392. doi: 10.1515/jpm-2018-0240. PMID: 30763267.
Fischbein R, Meeker J, Saling JR, Chyatte M, Nicholas L. Identifying families’ shared disease experiences through a qualitative analysis of online twin-to-twin transfusion syndrome stories. BMC Pregnancy Childbirth. 2016 Jul 15;16(1):163. doi: 10.1186/s12884-016-0952-6. PMID: 27422614; PMCID: PMC4946129.
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