Sterben am Lebensanfang
Auf einen Blick
- Projektleiter/in : Prof. Dr. Valerie Fleming
- Projektteam : Franziska Frank, Irina Iljuschin, Prof. Dr. Jessica Pehlke-Milde
- Projektstatus : abgeschlossen
- Drittmittelgeber : SNF
- Projektpartner : Bern, Fachstelle Fehlgeburt und perinataler Kindstod FpK
- Kontaktperson : Jessica Pehlke-Milde
Beschreibung
Background
The disclosure of a diagnosis during pregnancy of a fetal
congenital malformation incompatible with life normally comes
completely unexpectedly to the parents. While a body of
international literature has considered the topic, there is little
direct evidence generated in Switzerland. This study aimed to
illuminate contemporary treatment associated with such a diagnosis
regardless of whether parents make the decision to terminate or
continue the pregnancy.
Method
A qualitative design was used with data being collected by semi
structured interviews then subjected to a thematic
analysis.
Results
Sixty one interviews were undertaken with 32 affected parents and
29 health professionals. The theme of “temporality” dominated the
results with four main time points: diagnosis, decision,
birth/death and afterwards identified by the professionals.
Underpinning this were six major themes generated from parents
which extended across the span from receiving the diagnosis until
the interview: shock, choices and dilemmas, taking responsibility,
still being pregnant, forming a relationship with the baby, moving
on.
Conclusions
Care varied according to region but was as sensitive as possible,
attempting to give parents space to accept their loss but
fulfilling all the legal requirements. A gap exists between
diagnosis and decision with participants feeling pressured to make
decisions regarding continuing or terminating their pregnancy
although health professionals’ testimony indicated otherwise. A
major gap manifested following the decision with no available
palliative care packages. During the birth/death of the baby, care
was sensitive and appropriate but another gap manifested following
discharge from hospital, depending on insurance cover.en.
Weiterführende Informationen
Publikationen
-
Frank, Franziska; Maurer, Franziska; Pehlke-Milde, Jessica; Fleming, Valerie,
2018.
Das Gesundheitswesen.
80(6), S. 1-5.
Verfügbar unter: https://doi.org/10.1055/s-0042-116316
-
Fleming, Valerie; Iljuschin, Irina; Pehlke-Milde, Jessica; Maurer, Franziska; Parpan, Franziska,
2016.
Midwifery.
34, S. 23-29.
Verfügbar unter: https://doi.org/10.1016/j.midw.2016.01.014
-
Fleming, Valerie; de Labrusse, C.; Iljuschin, Irina; Pehlke-Milde, Jessica; Parpan, F.,
2015.
Les Dossiers de la Maïeutique.
2(3), S. 109-117.