Identifying families’ shared disease experiences through a qualitative analysis of online twin-to-twin transfusion syndrome stories

BMC Pregnancy and Childbirth

Research Article

Rebecca Fischbein¹  Lauren Nicholas²  Julia R. Saling³  Michelle Chyatte³  James Meeker³ 

[1] Department of Health Policy & Management, College of Public Health, Kent State University, P.O. Box 5190, 800 Hilltop Drive, Moulton Hall, 44242-0001, Kent, OH, USA;D’Youville College, 320 Porter Avenue, 14201, Buffalo, NY, USA;Northeast Ohio Medical University, P.O. Box 95, 4209 St. Rt. 44, 44272-0095, Rootstown, OH, USA;

关键词: Twin-to-twin transfusion syndrome (TTTS);    Qualitative;    Emotions;    Psychosocial;    Lived experience;   

DOI  :  10.1186/s12884-016-0952-6

 received in 2015-09-23, accepted in 2016-07-09,  发布年份 2016

来源: Springer

【 摘 要 】

BackgroundTwin-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.MethodsForty-five publicly accessible, online stories posted by families who experienced TTTS were analyzed using grounded theory.ResultsShared 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.ConclusionsTTTS 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.

【 授权许可】

CC BY   
© The Author(s). 2016