Identifying families' shared disease experiences through a qualitative analysis of online twin-to-twin transfusion syndrome stories. Issue 1 (December 2016)

• Record Type: Journal Article
• Authors: Fischbein, Rebecca; Meeker, James; Saling, Julia; Chyatte, Michelle; Nicholas, Lauren
• Is Part Of: BMC pregnancy and childbirth. Volume 16:Issue 1(2016)
• Page Start: 1
• Page End: 11
• Publication Date: 2016-12
• Subjects: Twin-to-twin transfusion syndrome (TTTS) -- Qualitative -- Emotions -- Psychosocial -- Lived experience; Pregnancy -- Periodicals; Childbirth -- Periodicals; Obstetrics -- Periodicals; 618.2005
• DOI: 10.1186/s12884-016-0952-6
• Languages: English
• ISSNs: 1471-2393

Abstract

Abstract Background Twin-to-twin transfusion syndrome (TTTS) affects 10–20 % of monochorionic diamniotic (MCDA) births and accounts for 50 % of fetal loss in MCDA pregnancies. This exploratory qualitative study identified shared experiences, including potential emotional and psychosocial impacts, of this serious disease. Methods Forty-five publicly accessible, online stories posted by families who experienced TTTS were analyzed using grounded theory. Results Shared TTTS experiences included a common trajectory: early pregnancy experiences, diagnostic experiences, making decisions, interventions and variable outcomes. Families vacillated between emotional highs such as joy, excitement and relief, and lows including depression, anxiety, anger and grief. Conclusions TTTS disease experience can be considered an "emotional roller coaster" exacerbated by TTTS's unpredictable and quickly changing nature with the potential for emotional and psychosocial effects. Increased TTTS awareness and research about its corresponding impacts can ensure appropriate patient and family support at all phases of the TTTS experience.