title: Identifying families' shared disease experiences through a qualitative analysis of online twin-to-twin transfusion syndrome stories.
abstract: 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.
  
  
  
  Forty-five publicly accessible, online stories posted by families who experienced TTTS were analyzed using grounded theory.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Health Policy & Management, College of Public Health, Kent State University, 800 Hilltop Drive, Moulton Hall, P.O. Box 5190, Kent, OH, 44242-0001, USA. rfischbe@kent.edu.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Fischbein
authors.affiliation: Northeast Ohio Medical University, 4209 St. Rt. 44, P.O. Box 95, Rootstown, OH, 44272-0095, USA.
authors.forename: James
authors.initials: J
authors.lastname: Meeker
authors.affiliation: Northeast Ohio Medical University, 4209 St. Rt. 44, P.O. Box 95, Rootstown, OH, 44272-0095, USA.
authors.forename: Julia R
authors.initials: JR
authors.lastname: Saling
authors.affiliation: Northeast Ohio Medical University, 4209 St. Rt. 44, P.O. Box 95, Rootstown, OH, 44272-0095, USA.
authors.forename: Michelle
authors.initials: M
authors.lastname: Chyatte
authors.affiliation: D'Youville College, 320 Porter Avenue, Buffalo, NY, 14201, USA.
authors.forename: Lauren
authors.initials: L
authors.lastname: Nicholas
mesh_terms: D000786:Anger; D001007:Anxiety / Q000209:etiology; D003657:Decision Making; D003863:Depression / Q000209:etiology; D004644:Emotions; D005260:Female; D005330:Fetofetal Transfusion / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy*; D005332:Fetoscopy; D006117:Grief; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D011256:Pregnancy Outcome / Q000523:psychology*; D018607:Pregnancy Reduction, Multifetal / Q000523:psychology; D011296:Prenatal Diagnosis / Q000523:psychology; D036301:Qualitative Research
keywords: Emotions; Lived experience; Psychosocial; Qualitative; Twin-to-twin transfusion syndrome (TTTS)