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dc.contributor.authorFleming, Valerie-
dc.contributor.authorIljuschin, Irina-
dc.contributor.authorPehlke-Milde, Jessica-
dc.contributor.authorMaurer, Franziska-
dc.contributor.authorParpan, Franziska-
dc.date.accessioned2018-04-27T12:25:29Z-
dc.date.available2018-04-27T12:25:29Z-
dc.date.issued2016-03-
dc.identifier.issn0266-6138de_CH
dc.identifier.issn1532-3099de_CH
dc.identifier.urihttps://digitalcollection.zhaw.ch/handle/11475/5651-
dc.description.abstractObjective: 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.de_CH
dc.language.isoende_CH
dc.publisherElsevierde_CH
dc.relation.ispartofMidwiferyde_CH
dc.rightsLicence according to publishing contractde_CH
dc.subjectTemporalityde_CH
dc.subjectFetalde_CH
dc.subjectMalformationde_CH
dc.subject.ddc618: Geburtsmedizin und Hebammenarbeitde_CH
dc.titleDying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an ‘in utero’ diagnosis incompatible with life is madede_CH
dc.typeBeitrag in wissenschaftlicher Zeitschriftde_CH
dcterms.typeTextde_CH
zhaw.departementGesundheitde_CH
zhaw.organisationalunitInstitut für Hebammenwissenschaft und reproduktive Gesundheit (IHG)de_CH
dc.identifier.doi10.1016/j.midw.2016.01.014de_CH
zhaw.funding.euNode_CH
zhaw.originated.zhawYesde_CH
zhaw.pages.end29de_CH
zhaw.pages.start23de_CH
zhaw.publication.statuspublishedVersionde_CH
zhaw.volume34de_CH
zhaw.publication.reviewPeer review (Publikation)de_CH
zhaw.funding.zhawSterben am Lebensanfangde_CH
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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.


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