Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an ‘in utero’ diagnosis incompatible with life is made

Fleming, Valerie; Iljuschin, Irina; Pehlke-Milde, Jessica; Maurer, Franziska; Parpan, Franziska

doi:10.1016/j.midw.2016.01.014

Publication type:	Article in scientific journal
Type of review:	Peer review (publication)
Title:	Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an ‘in utero’ diagnosis incompatible with life is made
Authors:	Fleming, Valerie Iljuschin, Irina Pehlke-Milde, Jessica Maurer, Franziska Parpan, Franziska
DOI:	10.1016/j.midw.2016.01.014
Published in:	Midwifery
Volume(Issue):	34
Page(s):	23
Pages to:	29
Issue Date:	Mar-2016
Publisher / Ed. Institution:	Elsevier
ISSN:	0266-6138 1532-3099
Language:	English
Subjects:	Temporality; Fetal; Malformation
Subject (DDC):	618: Gynecology, obstetrics and midwifery
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. Design: A qualitative design was used with data collected by semi-structured interviews and subjected to a thematic analysis. Setting: The research was conducted in the German speaking areas of Switzerland with data collected from participants in places of their choice. Participants: 61 interviews were conducted with 32 parents and 29 health professionals. Findings: 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.
URI:	https://digitalcollection.zhaw.ch/handle/11475/5651
Fulltext version:	Published version
License (according to publishing contract):	Licence according to publishing contract
Departement:	School of Health Sciences
Organisational Unit:	Institute of Midwifery and Reproductive Health (IHG)
Published as part of the ZHAW project:	Sterben am Lebensanfang
Appears in collections:	Publikationen Gesundheit

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Fleming, V., Iljuschin, I., Pehlke-Milde, J., Maurer, F., & Parpan, F. (2016). Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an ‘in utero’ diagnosis incompatible with life is made. Midwifery, 34, 23–29. https://doi.org/10.1016/j.midw.2016.01.014

Fleming, V. et al. (2016) ‘Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an ‘in utero’ diagnosis incompatible with life is made’, Midwifery, 34, pp. 23–29. Available at: https://doi.org/10.1016/j.midw.2016.01.014.

V. Fleming, I. Iljuschin, J. Pehlke-Milde, F. Maurer, and F. Parpan, “Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an ‘in utero’ diagnosis incompatible with life is made,” Midwifery, vol. 34, pp. 23–29, Mar. 2016, doi: 10.1016/j.midw.2016.01.014.

FLEMING, Valerie, Irina ILJUSCHIN, Jessica PEHLKE-MILDE, Franziska MAURER und Franziska PARPAN, 2016. Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an ‘in utero’ diagnosis incompatible with life is made. Midwifery. März 2016. Bd. 34, S. 23–29. DOI 10.1016/j.midw.2016.01.014

Fleming, Valerie, Irina Iljuschin, Jessica Pehlke-Milde, Franziska Maurer, and Franziska Parpan. 2016. “Dying at Life׳S Beginning: Experiences of Parents and Health Professionals in Switzerland When an ‘In Utero’ Diagnosis Incompatible with Life Is Made.” Midwifery 34 (March): 23–29. https://doi.org/10.1016/j.midw.2016.01.014.

Fleming, Valerie, et al. “Dying at Life׳S Beginning: Experiences of Parents and Health Professionals in Switzerland When an ‘In Utero’ Diagnosis Incompatible with Life Is Made.” Midwifery, vol. 34, Mar. 2016, pp. 23–29, https://doi.org/10.1016/j.midw.2016.01.014.