title: Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an 'in utero ' diagnosis incompatible with life is made.
abstract: OBJECTIVE
  The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of it comes from the United States and little has been generated from Europe. This study aims to illuminate the contemporary treatment associated with such diagnoses, regardless of whether parents decide to terminate or continue the pregnancy.
  
  
  METHODS
  a qualitative design was used with data collected by semi-structured interviews and subjected to a thematic analysis.
  
  
  METHODS
  the research was conducted in the German speaking areas of Switzerland with data collected from participants in places of their choice.
  
  
  METHODS
  61 interviews were conducted with 32 parents and 29 health professionals.
  
  
  RESULTS
  the theme of 'temporality' identified four main time points from the professionals: diagnosis, decision, birth/death, and afterwards. However, in contrast to these, six major themes in this study, primarily generated from parents and extended from receiving the diagnosis until the interview, were identified: shock, choices and dilemmas, taking responsibility, still being pregnant, forming a relationship with the baby, letting go. Although there was concurrence on many aspects of care at the point of contact, parents expressed major issues as gaps between the points of contact.
  
  
  CONCLUSIONS
  care varied regionally but was as sensitive as possible, attempting to give parents the space to accept their loss but fulfil legal requirements. A gap exists between diagnosis and decision with parents feeling pressured to make decisions regarding continuing or terminating their pregnancies although health professionals' testimonies indicated otherwise. A major gap manifested following the decision with no palliative care packages offered. During the birth/death of the baby, care was sensitive but another gap manifested following discharge from hospital.
authors.affiliation: Zurich University of Applied Sciences, Switzerland. Electronic address: flem@zhaw.ch.
authors.forename: Valerie
authors.initials: V
authors.lastname: Fleming
authors.affiliation: Zurich University of Applied Sciences, Switzerland. Electronic address: ilju@zhaw.ch.
authors.forename: Irina
authors.initials: I
authors.lastname: Iljuschin
authors.affiliation: Zurich University of Applied Sciences, Switzerland. Electronic address: pehl@zhaw.ch.
authors.forename: Jessica
authors.initials: J
authors.lastname: Pehlke-Milde
authors.affiliation: Zurich University of Applied Sciences, Switzerland. Electronic address: Franziska.maurer@bluewin.ch.
authors.forename: Franziska
authors.initials: F
authors.lastname: Maurer
authors.affiliation: Zurich University of Applied Sciences, Switzerland. Electronic address: parp@zhaw.ch.
authors.forename: Franziska
authors.initials: F
authors.lastname: Parpan
mesh_terms: D001291:Attitude of Health Personnel; D003657:Decision Making; D005260:Female; D005333:Fetus / Q000002:abnormalities*; D005817:Genetic Counseling / Q000523:psychology; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008880:Midwifery; D010290:Parents / Q000523:psychology*; D011247:Pregnancy; D011296:Prenatal Diagnosis; D011795:Surveys and Questionnaires; D013557:Switzerland
keywords: Fetal congenital malformation; Gaps; Temporality; Thematic analysis